Cook Children’s Health Care System was awarded the 2025 Pinnacle of Excellence Award for our inpatient experience from Press Ganey.   

This prestigious recognition reflects the consistent dedication and hard work that takes place at Cook Children's. Drawing on three years of data, this award places the health care system in the top three pediatric organizations in the country for overall patient rating and the likelihood of families to recommend for care.   

Press Ganey is a global leader in health care experience solutions and collaborates with more than 41,000 health care facilities to enhance overall safety, quality and experience of care.  

Following the Guardian of Excellence awards in 2023 and 2024, Cook Children’s has now reached a new peak. This latest honor represents the highest achievement awarded to the organization from Press Ganey further cementing Cook Children's unwavering commitment to the patient experience. 

“Caring for children requires more than clinical excellence. It requires heart,” Megan Chavez, Senior Vice President, Chief Experience Officer said. “This award is a testament to the many ways our teams turn fear into comfort and uncertainty into hope. The exceptional experiences created for children and their families through kindness, teamwork and dedication create a safe and healing experience for every child.” 

Despite this rapid growth, Cook Children's remains steadfast in its Promise that every child receives the very best care. The health care system dedicates this achievement to all 10,000 members of its team. Every employee plays a vital role in shaping a family’s experience and upholding a legacy of award-winning care. 

The state of Texas is trying to end a program that allows thousands of children to thrive.

That’s the message Liz Piñon wants to send to state leaders trying to end the Cook Children’s Health Plan. Liz’s children are among the 8,000 medically fragile kids on the health plan; her 12-year-old triplets and 19-year-old son have various medical needs and have relied on CCHP for six years.

In March, the Texas Health and Human Services Commission announced plans to deny Cook Children’s a new contract for the Medicaid STAR and CHIP managed care programs. In June, Cook Children’s took legal action against the state for its decision to cut funding for the program, which has provided care for more than 20 years.

“If they don't have a child like we do, I feel like all families have to know that they can be in this position from one minute to the next,” she said. “And if they do, you know, having a system like the Cook Children’s Health Plan is such a godsend.”

For Liz’s family, paying for medical needs was like paying for another mortgage.

Liz’s triplets, born at 25 weeks, each have their own medical complexities requiring four or five specialty medications. Liz initially had to stay home with the kids because no daycare would take them due to their medical needs. The financial cost of medication, medical care and other specialty needs quickly added up.

“It was such a nightmare doing private insurance for our kids,” Liz said. “We were living check-to-check. Even though my husband had a white collar job, we were in the food lines the last week of the month to get vegetables to puree.”

Six years ago, everything changed when the family applied for care with Cook Children’s Health Plan. When Liz called to apply, the nurse she talked to knew the kids’ doctors, the equipment they might need and the therapists they might need now and in the future. This was different from talking to a private insurance agent who likely had no connection to Liz’s family, the doctors they saw or the community care available to them.

With Cook Children's Health Plan, the family has access to specialists, therapists and various programs under the same roof as opposed to having to navigate multiple practices for each medical need.

For almost eight years, the family saw the same pediatrician at Cook Children’s. While the doctor is no longer at the hospital, it made all the difference to have a physician who developed a relationship with the kids and the family as a whole.

“It's not easy being a Latina with special needs kids in Texas, right? I feel like I was always scrutinized a whole lot more,” Liz said. “So it was just nice to know that this doctor knew my family, knew everything I did for my kids, right? And was a voice for our family.”

Cook Children’s Health Plan also connects families with a service coordinator, who helps coordinate all the specialized care the family needs. In Liz’s case, the coordinator not only connected the family with specialists and set up appointments, but she also ensured the triplets could attend daycare. This alone changed Liz’s life; Liz has been able to serve as an expert on the Department of Education Committee because she does not have to stay home 24/7.

As young tweens, the Piñon triplets are thriving. One of her daughters participated in a wheelchair dance performance in Los Angeles this summer. Her other daughter, who has severe anxiety, was able to perform on a stage in Disney with her choir.

“Anyone that sees my kids says, ‘Oh, they look fine,’” she said. “They don't know all the thousands of appointments, thousands of hours of therapy, thousands of phone calls that have been made for them to be thriving and doing as well as they are.”

The Cook Children’s Health Plan has allowed Liz and her family to thrive. That may not have been the case under a different insurance plan, like the ones the state plans to fund instead. Without Cook Children’s Health Plan, thousands of kids may lose that same opportunity to truly thrive.

Samuel and Kathy Grace Sudolcan’s home is filled with love, joy and hope. You see it in the smiles of their three sons, including 2-year-old Zechariah, despite the fact that every breath he takes is dependent on a well-equipped and working ventilator.

Samuel calls Zechariah’s vent “the old workhorse.” Though it's an older model, it never misses a breath. Over the years, the couple has mastered the art of operating, cleaning, and changing its fittings, and they wince at the thought of trading it in for a newer model. After all, why fix what isn't broken?

Change is hard, even in the best of circumstances. Change while caring for a child with complex medical needs, especially when unnecessary, is like adding a mountain to an already steep climb. It’s challenge on top of challenge. Stress on top of stress.

But that’s what thousands of families served by Cook Children’s Health Plan (CCHP) are facing due to a recent decision by Texas’ Health and Human Services Commission (HHSC). Despite having a 20-year record of excellence serving children and families in Tarrant County and surrounding areas, HHSC denied the renewal of Cook Children’s Health Plan’s contract for managing Texas’ STAR Medicaid and CHIP programs in its service area, starting in Sept. 2025.

Instead, the commission plans to award contracts to four national, for-profit insurance companies. The decision, made through an unfair and flawed re-contracting process, places more than 125,000 low-income families and children at risk of losing vital services and interrupting long-established relationships with their physicians. It ignores the human cost of removing access to well-performing, non-profit community resources such as Cook Children’s Health Plan and its trusted network of medical providers, and forces families to rely on out-of-state, for-profit providers.

Zechariah is one of the more than 8,000 medically fragile children covered under Texas’ STAR Kids program by Cook Children’s Health Plan. While his health care coverage is not yet impacted by HHSC’s decision, his story illustrates the important role Cook Children’s Health Plan plays in the lives of its members and their families. More importantly, if CCHP loses the STAR Medicaid and CHIP contracts, the future of the STAR Kids program at CCHP could become uncertain.

“This decision won’t hurt Cook Children’s as much as it will hurt our members we serve, many like Zechariah and his family,” said Karen Love, president of Cook Children’s Health Plan. “The families and children covered by Cook Children’s Health Plan deserve the ability to choose us. That’s why we have decided to file litigation in court to stop the state from ending our Medicaid STAR and CHIP managed care programs.”

The Steep Climb

The Sudolcans learned of Zechariah’s potential medical complications in the fourth month of Kathy Grace’s pregnancy. Her 20-week anatomy scan showed malformations of his heart and issues with his kidneys. Physical markers similar to what is seen in Down Syndrome were also present, leading doctors to believe Zechariah likely had some type of chromosomal abnormality. More invasive diagnostic testing would have put the pregnancy at risk without providing much treatment benefit, so Samuel and Kathy Grace could only wait, hope and pray for the best.

As the months ticked, by doctors outlined three likely scenarios the Sudolcans could face with Zechariah. There was a very real possibility he would not make it to birth. If he did, because his heart was small and weak, he may only survive a matter of hours after birth. Or, he could be stable enough to undergo surgery to repair his most critical cardiac malformations. 

“Because of how severe his heart and lung issues were, we made the decision to hold him for a bit after birth to spend time with him before he passes, instead of going immediately into the operating room where they were willing to do surgery but didn’t have extremely high confidence in his ability to survive,” Samuel said. “They gave us the option, which was hard but incredible that they trusted us with that decision.”

Ever the fighter, Zechariah not only made it to birth, but proved himself stronger outside the womb than in. Although weighing only 3 pounds, his vitals just after delivery were stable enough for him to be intubated and transferred to the Neonatal Intensive Care Unit (NICU) at Cook Children’s Medical Center – Fort Worth where doctors monitored his condition while mapping a treatment plan.

Zechariah spent five months in the NICU, followed by two months in the Transitional Care Unit (TCU). In that time, he underwent heart surgery and a number of procedures. Genetic testing revealed he has dystal 1q trisomy, a rare anomaly involving a duplication in chromosome 1.

“There are only 40 to 50 recorded medical cases of it. Even then, none of the others have his exact duplication,” Samuel said.

The list of complications from Zechariah’s anomaly is long and impacts nearly every system in his body. Today, about 35 medical professionals are involved in his care, including a mix of physician specialists, in-home therapists and a home health nurse.

In addition to his ventilator, the Sudolcan home is filled with medical supplies, equipment and accessories necessary for his care. Much of it is stored in a number of bins that line a wall in Zechariah’s room. Excess resources are kept in the family’s pantry.

If not for the help and support of Cook Children’s Health Plan, managing it all would be overwhelmingly complex and costly.

A Safety Net At Risk

While still in the NICU, a social worker introduced Zechariah’s parents to the Cook Children’s Health Plan. The health plan provides a robust support system for the Sudolcans, allowing Zechariah to be cared for at home, surrounded by those he loves, including his 4-year-old brother Malachi and 10-month-old brother Shepherd. From medical equipment to in-home physical, occupational and speech therapy to weekly visits by Zechariah’s beloved nurse, it’s all covered financially through various Cook Children’s Health Plan benefits and coordinated by a case manager.

The family communicates regularly with their service manager, Cheryl. She champions every need of Zechariah and his family, from scheduling appointments to ordering equipment. Cheryl helped the Suldocans get a specialized stroller that adapts to Zechariah’s growth and even suggested accessories that would help keep him comfortable in the Texas heat. As a fellow North Texan, Cheryl understands how harsh the weather can be. Additionally, her engagement with other families in the community who face similar challenges as the Sudolcans offers her valuable insights into local resources, which she’s quick to share with Samuel and Kathy Grace. 

From time to time, Cheryl even checks in on Kathy Grace to see how she is holding up under the stress of caring for a special needs child.

From personnel to equipment, together these benefits are a life-sustaining safety net for Zechariah and an invaluable support system for his family.

“I don’t know how to teach him to meet his milestones, because his development is so different from my oldest son,” Kathy Grace said. “So having these therapists come in has really helped me learn how I can best love and take care of him. On top of that, his nurse that comes in four times a week has taught me different medical things so I can help him to grow and stay comfortable. Because of them, I’m more confident as his mom.”

But all of it is at risk.

Why Fix What Isn’t Broken?

For Samuel and Kathy Grace, switching benefit providers could disrupt Zechariah's care, force a change to essential equipment like his ventilator, and consume hours on new authorization paperwork and phone calls to schedule appointments with new providers.

Zechariah could have to say goodbye to the Cook Children’s doctors who have cared for him since before his birth and the therapists and nurses he’s come to know and trust, losing a valuable well of knowledge of his background and progress.

It would be a tremendous upset to their whole lives, Samuel says, and now more than ever before.

An Unexpected Turn

Since first sharing Zechariah’s story at a press conference in June, his journey has taken an unexpected turn. A severe seizure just weeks after that appearance marked a significant change in Zechariah’s health.

While this has undoubtedly been a heartbreaking experience for the family and all who know them, the Sudolcan’s unwavering faith and resilience continue to inspire us. Their days are now filled with a delicate balance of hope and care. Monday visits from Zechariah’s grandparents bring cherished moments of laughter and love, a vital lifeline amidst the challenges.

As Zechariah’s needs have evolved, palliative care has become an integral part of his treatment plan. His parents and caregivers are dedicated to ensuring his comfort and happiness every step of the way.

Through it all, Samuel and Kathy Grace remain hopeful that HHSC will do what is right for the children of Texas and allow them the stability of remaining with Cook Children’s Health Plan and the benefits, equipment and providers they depend on. Cook Children’s is committed to providing uninterrupted Health Plan services as the family navigates this new chapter, offering unwavering support during this difficult time.

“Our families are worth fighting for, and we are going to continue to fight until the state does the right thing,” Love said. “The stakes are too high and the consequences are too great to let this flawed decision stand. And we are determined to ensure that it does not.”

We join a distinguished group of past recipients, including Amon Carter, a renowned Fort Worth leader, and the Fort Worth Stock Show & Rodeo.

Specifically, in a quote to the Fort Worth Report our President and CEO Rick W. Merrill said: "We are deeply grateful to the Fort Worth Exchange Club and its members for recognizing Cook Children's with the prestigious Golden Deeds Award.  It does not go unnoticed that we follow in the footsteps of countless trailblazers who have defined and shaped this city.

This recognition shines a light on the incredible legacy of care we've built over the last century and inspires us to continue writing the next chapter of this story – a story fueled by compassion, expertise and community collaboration. On behalf of our 10,000 employees, thank you."

Because we recognize the importance of schoolwork for our patients, Cook Children’s partners with Fort Worth Independent School District to provide school services to eligible patients while in the hospital setting. Our teachers work specifically with children and teens who have a chronic or complex diagnosis, are experiencing an extended hospitalization, or have sustained a life-threatening injury.

Whether they’re attending a session at the bedside or in the patient classroom on the first floor of the Fort Worth medical center, students receive one-on-one services to help them keep up with their schoolwork.

Get to know each of our incredible teachers, Marissa Glasschroeder, Laura Ralston and Nicole Rogers, by watching the videos below.

Football players and cheerleaders surprised patients in multiple departments at the Fort Worth Medical Center to spread some holiday cheer. Everyone was so excited to greet the team, especially after Thursday's win against the Seattle Seahawks!

Each child receives a stocking loaded with goodies from the Dallas Cowboys and a special toy provided by the UnitedHealthcare Children’s Foundation.

Under the guidance of Mrs. Gene Jones, the entire Cowboys team has conducted annual holiday visits to local children’s hospitals for the past 34 years – a very special tradition that we are all grateful to experience.

Media partners may use this content for news stories and broadcasts with credit to Cook Children's.

by Heather Duge

Two days after Abbey Bell delivered her baby girl, Kitson, she turned to a Down Syndrome Facebook page for advice.

That is where she found Courtney Morey – a mom who would understand everything she was about to go through. Courtney’s daughter, Annie, also has Down Syndrome and underwent heart surgery at Cook Children’s.

“After finding out Kitson would need heart surgery, it felt like a lot,” Abbey said. “I was in shock and very worried."

Mending the Tiniest of Hearts
Kitson’s AV canal was open and would need to be repaired. The Bells are from New Mexico and Abbey wanted to find the best place for Kitson’s surgery. Abbey said she started praying and gave it all to God.

“It felt like we were battling all these unknowns and the pieces needed to come together,” Abbey said.

She ultimately felt like God was leading her to Cook Children’s. After her first interaction with the surgeon, she knew it would be the right place. The next few months focused on Kitson’s weight gain, and at five months old, she was ready for surgery.

“Passing my baby off to the medical team was the hardest thing I have ever had to do,” Abbey said.

Four hours later, Abbey and her husband saw the medical team wheeling their tiny baby through the hallway. A huge wave of relief came over them but seeing her hooked up to all the machines was hard.

“You can’t prepare yourself to see your child like that,” Abbey said. “The staff knew what it was like for us as parents and they were amazing to us.”

For the next several days, Kitson remained sedated, but Abbey said she began responding in ways that made them certain she was there.

Caring for Kitson in Special Ways
Slowly as more tubes and wires were removed, Abbey had her baby back. During the hard moments in the Cardiac Intensive Care Unit, Abbey remembers pediatric cardiologist Susan Davis, M.D. being there for her.

“I was exclusively breastfeeding Kitson, so it was hard,” Abbey said. “But Dr. Davis who has a nickname of ‘mama bear’ in the CICU came in and comforted her in all the right ways. It was the sweetest moment to see a doctor take the time to rock my baby’s bed back and forth.”

Kitson recovered ahead of schedule and moved to the stepdown unit. With the help of child life specialists, Abbey learned how to hold her post-surgery. Kitson even worked on tummy time. But on day four, Kitson developed pulmonary hypertension. She would need more time to recover.

For the next five days, Kitson’s care team worked on the right treatment plan for her lungs. Abbey said the daily interaction with the doctors was something she had never experienced. 

“It’s very rare that doctors feel more like friends,” Abbey said. “When they came into the room, we felt heard more than we ever have before. They knew Kitson not just as a patient but as a person.”

With Abbey’s husband back home to care for their other two children, she said many days felt daunting being cooped up in a hospital room and not knowing how long they would be there. But it was people like Ginger Brewer who made all the difference.

“I’m a runner and felt stuck inside,” Abbey said. “Our nurses Ginger and Madison told me I needed to go get some sunshine. When I came back in, Ginger was still holding Kitson. It meant so much to me.”

For Ginger, holding Kitson was the highlight of her day. 

“To say I was excited when I had Kitson as a patient would be an understatement,” Ginger said. “Her parents loved on her literally all day and night. So when Abbey stepped outside to take a break, I was so thrilled and encouraged her to stay away as long as she needed. I was honored to care for Kitson and her family during their journey at Cook Children's. The experience filled my heart and reinforced why I do what I do.”

Back Home and Thriving
Kitson’s lungs improved, and they made the trip back home to New Mexico. Abbey says she was worried about being home since they live in the country, but the doctors said she could contact them with any questions.

“Even though we’re back home now, they told me Kitson is a forever patient at Cook Children’s,” Abbey said. “I have contacted them several times with questions, and they have been so helpful and reassuring.”

Now eight months old, Kitson is thriving and back to her spunky self. Abbey says she is hilarious and wild – “a ball of fire.”

“Kitson is our warrior baby,” she said. “She is such a joy in life that we didn’t know we needed.”

Answers to Mila’s Pain

In January 2023, Mila was diagnosed with central sensitization syndrome, slipped rib syndrome and hypermobility syndrome. For four years, Mila’s mom, Shelley Hunter, had taken her daughter to countless doctor visits to find answers to why she limped when walking and the extreme pain all over her body. When Cook Children's Pain Management was recommended to her, Shelley was hesitant. She didn’t want Mila to just be given strong pain medications. She quickly realized this was not the approach at all.

At Cook Children's Pain Management, the doctor knew exactly what Mila was dealing with right away. 

“She answered all the questions we had for years,” Shelley said. “Instead of dismissing our concerns, she listened and helped us understand Mila’s conditions.”

Mila was referred to the Comfort Ability Program which she attended in March. The relief Mila felt when meeting others just like her was indescribable.

“For so long I felt alone because I was sick in a way that no one else was,” Mila said. “At the workshop, I learned a lot, but the most important thing was knowing there were other people just like me. I finally felt like I belonged.”

Life-changing Workshops Engage Children and Parents 

The Comfort Ability Program at Cook Children’s is one of a few of its kind in Texas. Boston Children’s Hospital is partnering with children’s hospitals throughout the world to give parents and kids the opportunity to engage in workshops that focus on proven coping skills using cognitive behavioral therapy. 

Artee Gandhi, M.D., medical director of pain management, said the six-hour workshops – one for children and one for parents – help children reduce their pain in non-medical ways. Clinical therapists and pain psychologists explain the science behind the pain and how they can best support their children. Through group therapy, children learn strategies to manage their pain and are taught more about their conditions so they can educate their friends, teachers and others. The program is meant to be one piece of a patient’s treatment plan and complement the entire host of options provided at Cook Children’s.

“Others may not see it on the outside, but these children are struggling on the inside, so we give them tools and strategies to employ anywhere and throughout life,” Dr. Gandhi said. “The brain is a powerful tool, and we help them use it.”

The program teaches both children and parents how the nervous system works in the body and why skills rooted in psychology can help. During the workshop, patients learn how to calm down their nervous system through belly breathing, guided imagery, art therapy, aroma therapy, mindfulness and biofeedback therapy.

Patients from 10 to 17 years old with any condition that causes chronic pain for more than three months can participate. Some of the conditions include central sensitization syndrome, chronic headaches, IBS, fibromyalgia and chronic back pain.

A Program Filled with Hope

Matthew Reed, pain management clinical therapist and site director of the Comfort Ability Program, has been at Cook Children’s for 10 years and treats children with chronic pain on an individual basis. He says the goal is always to reduce the attention on pain and get kids back to living. 

“We see a lot of patients who think the pain will last forever and believe there isn’t a path out of it,” Reed said. “There is a lot of hope built into this program, and one of the greatest benefits is the kids connecting with others.”

Patients who attend the workshops also have access to an online platform where they can engage with others around the world with the same condition. The first couple of workshops have been very successful and are now in high demand. 

“It has been very rewarding to see patients realize there is a path out of their pain,” Reed said. 

‘I feel like myself again’

Shelley said even Mila’s teachers noticed that in a matter of a few months, Mila is now a totally different person. She credits the Comfort Ability Program with Mila’s newfound confidence.

“My mental health is a lot better and so is my pain,” Mila said. “I’m starting to feel like myself again.”

It is a heartbreaking position for any parent to be in — knowing that a potentially life-saving drug treatment may also cost your child the ability to hear. This was the difficult reality for Brant and Ashley James after their son, Pierce, now 3, was diagnosed with a rare cancer. 

In his nearly 4 years of life, Pierce James, who his family calls Fierce Pierce, has faced more challenges than many adults experience in an entire lifetime. He was born at the edge of viability at 25 weeks gestation and spent 83 days in a neonatal intensive care unit. Even so, Pierce thrived as an infant and toddler despite some delays due to his prematurity.

But four days before his 2nd birthday, the James family received devastating news.

Just as Brant and Ashley were on the mend from a bout with COVID, Pierce seemed to be coming down with the virus as well. So Brant took his son to an urgent care close to their home in Rockwall to get checked out. He was soon told it wasn’t COVID. Instead, physicians suspected something much more serious and arranged for Pierce to be transferred to a nearby hospital. 

“About four hours later, I received a phone call from the doctor and my husband, and the words out of the doctor’s mouth was, ‘We have some bad news to tell you,’” Ashley said. “At that moment, they told me that they were pretty confident that Pierce had cancer.”

In fact, Pierce had a rare liver cancer called hepatoblastoma. It was classified as stage 4, metastasized to his lungs and required aggressive chemotherapy to treat. 

Risk and Reward

Throughout the course of his treatment, Pierce experienced several setbacks, some of them life-threatening. But one complication was particularly difficult for Ashley to reconcile. 

Pierce’s chemotherapy protocol included a drug called cisplatin. While it is effective at killing cancer, it is also an ototoxic medication, meaning it can damage the inner ear and cause hearing loss. Thanks to the chemotherapy protocol, Pierce is now cancer-free, but he does have permanent and profound hearing loss. 

“The cancer is gone and we're believing it's never ever coming back,” Ashley said. “But the hearing loss, without a miracle from God, is irreversible. It's not going to change and it’s just very hard. I've come to terms with it, but it's still very hard for me that my baby has lost his hearing because, I'm like, hasn't he suffered enough?”

Once the cancer was under control, Brant and Ashley turned their attention to dealing with Pierce’s hearing loss. As a then 2-year-old, Pierce was at a critical point for speech and language development. His parents wanted to be as persistent with audiology interventions as they were with chemotherapy. The family turned to Cook Children’s Pediatric Audiology services for help.

“There are certain chemotherapies that cause hearing loss in children and adults. So we're very involved with Hematology and Oncology,” said Lisa Vaughan, AuD, manager of Cook Children’s Audiology services. “A lot of times we do testing prior to the kids starting chemo. We get a baseline hearing test for every kid before they start, and then we monitor them throughout all of their treatment.”

Sometimes, if hearing loss is suspected, treatment can be adjusted. Other times, as in Pierce's case, hearing loss is the lesser of two evils. 

“It's really hard because it's just one more thing for these families,” Dr. Vaughan said. “Your child has cancer and we now have to watch their hearing. You're going to go through some really horrible treatments, and then when we're done with this and things are better, we may be saying your child’s hearing is permanently damaged. It’s a hard conversation because these families have been through so much.”

Cook Children’s Audiology services moved quickly to help Pierce. He completed his final round of chemotherapy in September 2022 and, by the end of that month, also had his first set of hearing aides.  

The New Age of Sound Waves

Each year, one to three out of every 1,000 babies are born with hearing loss. Others experience hearing loss from trauma or as a result of medical treatment. 

 Because of developments in audiology technology there is hope for hearing-impaired children.  Dr. Vaughan says with early intervention, children with hearing loss perform as well as their hearing peers academically. 

“We can do the surgical cochlear implant as early as nine months to get a baby hearing great so that they can compete with their hearing peers,” Dr. Vaughan said. “The other big thing on the horizon is unilateral loss and being able to implant a cochlear device in just one ear. In the past we've thought hearing from one ear will suffice. But what we've realized over the last 15 years is that kids with hearing loss in one ear have lots of trouble in the classroom because of background noise and localization. Now we can make both ears equal.”

Hearing aids have come a long way, too. Gone are the days of manually turning the volume or frequencies on hearing aids up and down using a screwdriver. Now, hearing aids are sleeker, come in multiple colors, are equipped with bluetooth technology and are digitally programmed to allow individuals to hear everything from the tiniest frequency to the biggest sound.

Cook Children’s Audiology services offer these interventions, as well as bone conduction implantable hearing devices and a full range of auditory testing. They also provide protective devices such as custom earplugs, like those that help protect the hearing of musicians while also allowing them to hear each musical note. 

“Musician plugs have a filter on the end that allows musicians to hear the sound but at a lower volume. They do not distort or affect the quality of the music,” Dr. Vaughan explained. “We see a lot of performers now with monitors in their ears. Those are also to protect their hearing so they can perform longer. These are great for kids in high school bands or those that like listening to loud music.”

Early Ear Intervention

Protecting your child’s hearing and having your newborn screened for hearing loss are the two most important things parents can do for their child’s audiology health and for their speech and language development. 

Newborn hearing screenings are required at any birthing center with 50 or more births per year. If a baby fails the screening at birth, they can be rescreened at one month. If they fail the second screening, a diagnostic evaluation can confirm hearing loss by three months and intervention can begin by six months, giving a child the best chance at language development on par with their hearing peers. 

“Without that, when we wait until they are two or three and discover their words aren’t sounding great or they aren’t talking at all, then their brains have missed two to three years of learning,” Dr. Vaughan said. “It’s really hard to backtrack to correct. Newborn hearing screening is so very important. If we do the hard work on the front end and get things moving, hearing impaired children perform at equal levels to fully hearing children.”

The James family’s urgency to have Pierce fitted for hearing aids as soon as possible following cancer treatment set their once-hearing child on a course to recover as much speech and language development as possible. Since the completion of cancer treatment one year ago, Pierce has relearned to crawl and walk, and recovered many fine motor skills. He’s beginning to vocalize a number of sounds, too, including the sweetest sound to every mother’s ears — her baby calling for “mama.” 

Related Stories:

Exploring pediatric audiology and advancing development for children with hearing loss | CookChildrens.org

Having a child in the hospital is tough on any family, but imagine navigating a hospital admission if English isn’t your first language. That’s the case for many families at Cook Children’s.

To help in situations like this, a group of parents and Cook Children’s employees formed the Hispanic Family Advisory Council (HFAC) to advocate for Hispanic families, identify gaps in family centered, culturally congruent care experiences and empower Spanish-speaking parents to be partners in the care of their children.

Hispanic Family Advisory Council (HFAC)

The Cook Children’s HFAC, which started in 2016, works to ensure our Hispanic patients and families experience the highest quality health care possible.

The HFAC meets once a month to share perspectives on their Cook Children’s experiences, partner with staff to implement suggested changes and provide general feedback on how to make care better for Hispanic patients and their families. The group serves families and care teams as it works to help raise awareness of how cultural differences affect families’ care in the medical center.

The HFAC members act as a resource to guide culturally sensitive services and interactions at Cook Children’s. Employees from various departments attend the HFAC’s meetings to gain feedback on system-wide initiatives and how they impact Hispanic families.

Two councilmembers, Lucía Nájera-Gartman and Lizdelia Piñon, Ed.D., share their families’ journeys to connect with and advocate for Spanish-speaking families admitted to the medical center.

Lucía’s Story

Lucía Nájera-Gartman is a Cook Children’s parent mentor, parent advisor, HFAC member and mother of two children – Danielle, 29, and Dennis, 24. Her family is Mexican-American and her children hold dual citizenships from México and the USA.

Her daughter, Danielle, has Lennox-Gastaut syndrome, a severe type of epilepsy that develops in young children and often leads to life-long disability. She received care in Mexico until she was 10 years old and began care at Cook Children’s in 2005 when her family moved to the U.S. Their health care experience was different from that which they received in Mexico.

“I had to come here and learn everything from scratch, which is the case for a ton of families,” she said. “It’s an extremely complex health care system that you have to learn, especially if you have a child with complex care needs.”

One of the biggest differences Lucía noticed at Cook Children’s was the focus on family-centered care. In 2010, Danielle was admitted to the medical center at the same time Lucía’s ex-husband was in a plane crash. The two family members were admitted to Intensive Care Units across town from one another.

“I noticed how the Cook Children’s staff took the situation into consideration when they were talking to me,” Lucía said. “They would ask, ‘Are you eating?’ ‘Are you resting?’ They knew I was running between two hospitals. And it immediately made sense to me. They were not only focusing on my daughter, which is great, but they were also thinking of all the other things happening and affecting my family. To me, that was just huge.”

When Danielle was discharged, she went home with a new set of needs, including a wheelchair and in-home medical equipment. Lucía said she hadn’t known those resources would be provided.

“I had no idea all of this was available,” she said. “I was learning so many new things. I think that’s how it goes in general for everyone, but if you come from a different country, you have a different set of expectations. I didn’t know I’d be receiving so much help. ”

That experience inspired Lucía to volunteer as a parent mentor and to join the Neurosciences Family Advisory Council. Lucía connected with families who were being cared for in the Neurosciences department.  

Soon after that, she met Vicki Kelley, director of family engagement at Cook Children’s. They recognized the need for a council dedicated to Spanish-speaking/Hispanic families and eventually helped to create the Hispanic Family Advisory Council.

Although her daughter has aged out of Cook Children’s Health Care System, Lucía returns to the medical center every week as a Parents As Partners volunteer to visit parents whose children are hospitalized. These visits are more than a social drop in. They are valued, purposeful opportunities to engage with and support Spanish-speaking patient families. Parents’ faces light up when they meet her because they find they have so much in common.

“I’ve met incredible parents,” she said. “It’s very easy for me to connect with them because I speak the same language and often use many of the expressions that are common within our culture. I tell them I’m a mom who has gone through very similar situations. That usually leads to very open and trustworthy conversations.”

Connections Lucía makes often result in some form of action, such as getting a parent a blanket, informing the family about how to get a food voucher or referring a family member to a social worker to arrange transportation. She makes a point to encourage each parent to place value in self-care.

 “Parents can only take care of their children if they take care of themselves,” she said. “So I tell the parents that if they are strong and feel supported, they’re going to be better supporters of their children.”

Lucia’s parent mentor contacts often also result in changes that benefit many patients and families. She is able to gather information regarding parents’ concerns and share with the HFAC. One example of information that brought about meaningful change was the expansion of Camelot Court’s menu to include cultural-related food options.

Liz’s Story

Lizdelia Piñon, Ed.D., is a HFAC member and mother of four children. Her 11-year-old triplets, Santiago, Frida and Felícita, were born at 25 weeks gestation, each weighing about one pound. They spent between 99 and 115 days in an Illinois Neonatal Intensive Care Unit.

When the triplets were six months old, the Piñon family established their care at Cook Children’s. They see multiple specialists in the Dodson Specialty Clinics.

“My kids are half-Mexican and half-Puerto Rican,” Liz said. “I tell them being Hispanic is our superpower! We have all these different things that make us unique and very special. We bring a different set of needs to the hospital.”

Kelley connected Liz with Lucia and the HFAC, and through the years, Liz has provided feedback about her family’s experiences to initiate positive change.

Liz and the HFAC have added cultural considerations and perspectives in many areas. Signage across the medical center has improved. The new P1 garage created for the Dodson Specialty Clinics has van-accessible spaces and wide elevators to accommodate wheelchairs and strollers. More images of Hispanic children hang on the walls. Departments within the Medical Center have a greater awareness of the importance of hiring bilingual staff.

Councilmembers work on a variety of projects to support Hispanic families at Cook Children’s. Liz said one of the council’s biggest events is a Hispanic resource fair, which will take place on Oct. 7, 2023. At the fair, bilingual staff and volunteers will share information about services offered at Cook Children’s. Community resource representatives will attend and provide information for staff and families.

“One big concern that we brought up is that there are services here that our Hispanic families may not know about,” she said. “We encourage all Spanish-speaking families to attend. This should be where our families who need care come to get the services they need, regardless of their status or language.”

“I’m grateful and I love being an advocate for all of our families – our Hispanic families and our special needs families,” she said. “I’m always fighting for the needs of all our kids! I wanted Cook Children’s to be even more inclusive of all our families who come visit. The Dodson Specialty Clinics building now has a companion care restroom large enough to fit a wheelchair and multiple children. These restrooms are the result of advocacy by dedicated parents whose needs for their children were listened to by decision-makers at Cook Children’s.”

The Cook Children’s HFAC: A Success Story

The Cook Children’s HFAC does an incredible job of highlighting the Hispanic perspective to bridge the gap between patients’ and families’ viewpoints and experiences and organizational decision-making.

Lucía and Liz agree that the council is so successful because each member has joined with the intention of learning about the Hispanic culture. They also praise their leader, Kelley, who they say opens doors for them.

“Vicki is a great leader who believes in us,” Lucía said. “She has introduced us to so many people. She trusts us. That allows us to really speak our minds and then work together to find solutions.”

Cook Children’s employees seek the council’s knowledge and perspective with an open mind and a willingness to improve practices.

In addition to providing insight internally, the FAC has traveled to conferences across the country to give presentations about how they got started and how they function. The HFAC emphasized the importance of institutions partnering with parents to learn about other cultures.

If you’re interested in making an impact by joining the Cook Children’s HFAC, or know of a parent from the Hispanic community whose child is a patient of CCHCS and would be interested in serving on the HFAC, please reach out to the Parents As Partners coordinator, Natalie Dorsey (Natalie.Dorsey@cookchildrens.org).

A Special Thank You

We are so grateful for each member of the Cook Children’s HFAC. Each member’s efforts have created enormous benefits for programs, other families, caregivers and staff, and especially the babies, children and teens who experience care at Cook Children’s.

Lucía Nájera-Gartman, Councilmember
Lizdelia Piñón Ed.D., Councilmember
Vicki Kelley, MS, CCLS, Director of Family Engagement
Anylu NerioGarza, Manager of Language Services
Jennifer Stephen, Ph.D., RN, CPN, Education Coordinator
Jan Crockett, Content Strategist
Anu Partap M.D., M.P.H., Physician Director of Health Equity

By Jean Yaeger

Splashes of water flow with a soothing sound for those who seek contemplation and peace at the Cook Children’s Medical Center – Prosper chapel.

Sunlight enters softly through pastel flourishes on the windows. A table displays the Bible, the Quran, the Tanakh, and a few children’s books. Slips of paper are available if someone wants to write a prayer request. Visitors may also use the prayer rugs folded in a basket.

The Prosper Medical Center opened in January 2023, and since then its nondenominational chapel has offered a respite for people of any religious background or no particular faith. You won’t see fixtures resembling the interior of a church, temple or mosque. That’s because the chapel was designed to be an inclusive and nurturing environment for all people. The Prosper Chapel printed glass wall installation features the replicated painting Touching Petals© by the artist Vara Kamin.*

“It’s a sacred space for everybody to feel seen, to feel welcome, to feel valued no matter what their faith tradition or their life journey may be,” said Jennifer Hayes, M. Div., Cook Children’s Director of Spiritual Care.

While it’s not for public use, the chapel is open all hours for patients admitted to the Prosper Medical Center and their families. Hospital employees frequently stop in too. There’s a sense of tranquility and rest -- for the body, mind and soul.   

“The employees especially enjoy the beautiful ambient sound from the water feature. It creates a space to retreat and reflect or to simply take some time to recharge,” said Amanda Payne Lindsay, M.Div., a chaplain at the Prosper Medical Center. “It’s really beautiful when I come in the chapel and see that both the prayer mats and the Bibles have been used.  We offer a place for everyone to honor their faith.”

Imagination and Collaboration

With the help of Cook Children’s patients, McKinney artist Jim Wilson is creating a custom mixed medium artwork to be hung on a blank wall of the chapel. Child Life specialists handed out “Chapel Art Bags” with supplies that patients used to paint, sketch or write words that will help shape the commissioned artwork. For inspiration, the bags contained a few prompts:   

• What is God like?
• What is love?
• What questions do you have for God?
• What makes you feel better?

An 11-year-old, for instance, drew heart-shaped bubbles blown from a wand. Another submission features the wisdom of a 3-year-old: “Doctors help me feel brave. Daddy and Mama make me feel brave.”

Wilson is working to incorporate the patients’ contributions – plus maps, photos and materials that reflect Cook Children’s history -- into an abstract collage roughly 4.5 x 6.5 feet in size. Wilson plans to cut up the papers, glue the fragments to a panel, add paint, sand it, and apply an acrylic finish. He envisions a cohesive tapestry assembled from many parts.   

“Hopefully there will be a lightness to it, a joy infused into it, peace and serenity,” he said.

His collaborators – the children – will be able to see glimpses of their efforts in the end result, which Wilson expects to complete by the end of 2023. He says it’s an honor to produce an installation that may help console and support future chapel-goers who face circumstances of grief or fear.

“I feel a sense of responsibility,” Wilson said. “If I can be part of a team that makes what these people are going through a little bit easier or a little bit more peaceful, then I’ve been a part of a wonderful thing.”

Hayes predicts the chapel centerpiece will showcase the track record of generosity and respect in the culture at Cook Children’s. “And the hope that our goodness will continue to positively impact our community,” she said.

Spirituality through Connections

The Spiritual Care team at Cook Children’s has the training and resources to engage with patients at every age in meaningful ways that reflect their faith traditions. The job encompasses a calling to listen with kindness, give guidance, serve as an advocate, and tend to hurting spirits.  They don’t judge or try to convert anyone.

Often, the first contact the Spiritual Care department makes with families is through the beloved PrayerBear program. Volunteers gave away almost 17,000 PrayerBears at Cook Children’s Medical Center – Fort Worth in 2022. The gift of a PrayerBear encourages and comforts patients during their stay in the hospital.

Hayes points out that playfulness is key to building rapport with a young child. A chaplain might speak in a silly voice pretending to be the PrayerBear. And the chaplain finds out what’s important to the child. She recalled a time she helped a constipated patient pray about … well, pooping.

“You have to be willing to step out of what some people would deem typical clerical behavior,” she said. “You have to be able to laugh. You have to be able to play games. Because if you can't tend to their spirit without using overtly religious language in the small things, then they're not going to trust you in those big things.”

Teenage patients might feel angry or ask hard questions related to their health challenges. Hayes said the chaplains strive to help teens process their emotions and find hope. Spiritual Care also serves parents and siblings, if desired.

For those who have no specific faith tradition or religious beliefs, the Spiritual Care team can minister to the universal need for connection and community. “Every single person we encounter has that thread of humanity,” she said.

Hayes wants to bust the myth that hospital chaplains push religion on people or condemn those who don’t adhere to a particular faith.  

“We're kind of like the scaffolding of buildings," Hayes said. “We’re there to support you when you feel like you're falling down. And if that's what you need in that moment, then we're going to do everything that we can to be that scaffolding and to uphold you.”

Editor's Note: *S.I.T.E.™ (Sensory Immersion Transition Experience™) by Vara Kamin provides in-person immersive artistic service in healing spaces designed to reduce over-stimulation and engage the relaxation response. S.I.T.E ™ is a transformational tool and experience that invites individuals to connect with their innate healing capacities through self-reflection and the cultivation of insight.

Related Stories:

Beary Special Update: Thank You for Restocking the PrayerBear Den!

Happy 25th Birthday to Cook Children's PrayerBears! 

When the Ray family embarked on a cruise in April to celebrate Caleb Ray’s 18th birthday, their focus was on celebrating a milestone, not the sickle cell disease Caleb has lived with since being diagnosed shortly after birth. 

Towards the end of the cruise, Caleb developed a fever and began to experience pain. The family knew the pain was likely associated with sickle cell, but none of the normal remedies Caleb used to treat a sickle cell pain episode gave any relief. After disembarking and arriving home, his pain grew so severe that his family took him to the Emergency Department (ED) at Cook Children’s Medical Center where he was admitted to the hospital.

Shortly after, Caleb’s lungs, liver and kidneys began to fail. He was transferred to Cook Children’s Pediatric Intensive Care Unit (PICU) where he was placed on a ventilator to support his breathing, and continuous dialysis to rid his body of the buildup of toxins from kidney failure. His prognosis was grim. 

A Viral Trigger

A battery of tests revealed that Caleb’s life-threatening sickle cell crisis was triggered by a common childhood virus called Epstein-Barr (EBV). Many people are infected with EBV in childhood and experience little to no symptoms. In some cases, EBV can lead to infectious mononucleosis, also known as mono, according to the Centers for Disease Control. Healthy teens and adults who contract EBV and have symptoms usually recover within a few weeks. But for those living with SCD, any virus, even those that are common and typically mild, can trigger serious complications.

“The Epstein-Barr virus triggered something called EBV-induced sickle hepatopathy,” said Clarissa Johnson, M.D., hematologist and SCD specialist at Cook Children’s. “Essentially, that is a condition where you can develop acute liver failure, which he did. And when you develop liver failure, it can affect other organs, including your kidneys.”

Caleb also developed acute chest syndrome, a severe lung-related complication of SCD and one of the leading causes of death in individuals with sickle cell, according to the American Lung Association. In acute chest syndrome, sickled cells block vessels in the lungs, leading to a pneumonia-like illness.  

“Any one of those organ systems getting critically ill can result in a person's death, particularly a sickle cell patient,” said James Marshall, M.D., a pediatric intensivist at Cook Children’s. Dr. Marshall cared for Caleb while in the PICU. 

Caleb’s mother, Stephanie Ray, and grandmother, Tracy Ray, kept constant vigil at his bedside. 

“I didn't know how he was going to come out of it,” Tracy said. “They were talking about his kidneys not working and possibly needing a transplant. It was just all horrible news. I just kept telling Stephanie and my family that we can't be moved by what we see, but stand on what we know and we know that God can heal.”

Caleb underwent a number of supportive treatments and therapies while in the PICU, including an exchange transfusion to quickly reduce the percentage of sickle cells in his body and prevent further damage to his organs. A host of medical specialists, including Dr. Marshall, Dr. Johnson, nephrology, pulmonology and many more, closely collaborated on Caleb’s case.

“Part of our method of caring for critically ill children at Cook Children’s is to freely bring in subspecialists to focus on specific organ system disorders with the critical care doctors kind of quarterbacking the team,” Dr. Marshall explained. “In most intensive care unit settings for children, the critical care doctors run it all with advice from the subspecialists. But we work as a team, so there's not someone telling the others what to do. It's a bunch of us getting together and pondering the patient, day and night, thinking of the best combined strategy.”

With the support of his family and care team, Caleb overcame the odds against him and was discharged from the hospital on May 25, one month after he was admitted to Cook Children’s. 

“All patients like Caleb would have not survived,” Dr. Marshall said. “But his whole body and mind all wanted to get better. I was with him when we took out his breathing tube and let him wake up and was able to learn more about his personality. He was just as cheerful and vigorous coming out of the dark, dark night of critical care as any young man that I would meet. So a strong spirit and a positive approach to life, particularly when you have something that’s going to be with you for life, like sickle cell disease, is just absolutely required to get through the low spots.”

Lifelong Care

Sickle cell disease (SCD) is an inherited blood disorder that affects the body’s hemoglobin, or the protein in red blood cells that carry oxygen throughout the body. A mutation in the hemoglobin gene causes red blood cells to be sticky, rigid and shaped like crescent moons, or sickles, instead of round, flexible and flowing easily through the blood vessels like normal red blood cells. Sickled cells can clump together and block the flow of blood, resulting in inflammation and pain from decreased oxygen to the organs. Sometimes the pain can be so severe an individual requires hospitalization, like in Caleb’s case. 

September is National Sickle Cell Disease Awareness Month. An estimated 100,000 people in the United States have SCD. It primarily impacts people of African descent, those from Central and South America, and people of Middle Eastern, Asian, Indian and Mediterranean descent. 

There are several types of SCD, the most common being Hemoglobin SS, usually referred to as sickle cell anemia. Caleb has Hemoglobin SC, the second most common type of SCD. Hemoglobin SC has similar symptoms as SS, although sometimes less severe. Symptoms can be mild throughout childhood but worsen with age. 

“Some of our families whose children have SC may think that their child is not at risk for problems and that is not true,” Dr. Johnson said. “People with SC don't tend to be the ones who are in the hospital the most and they don’t tend to have some of the more severe complications that we see, that's going to be our SS patients, but the older someone gets with SC disease, they can begin to have more problems.”

That’s why Dr. Johnson says it's important for Hemoglobin SC families to stay engaged with their doctor and their care throughout childhood and adulthood. 

Family Focused

While SCD limited Caleb’s ability to play some sports while growing up — over-exertion and dehydration can trigger SCD pain episodes — it hasn’t stopped him from living life to its fullest. The key, he says, is to take things “day by day.” That’s what his family did during his latest health crisis, although his grandmother said it was more like one prayer at a time.

The Ray family points to the doctors, nurses and staff who cared for Caleb as contributors to his healing, too. They say everyone from the medical providers to food service and the housekeeping teams were dedicated to Caleb’s care and to making them feel like family.

“We cannot thank them enough,” Tracy said. “They touched us in a special way. I mean, we’re a  Black family and most of the staff were white. We never felt any kind of resistance at all, and that's just not the life that we live. But those nurses took care of Caleb like he was theirs. They were so respectful. Even when he was intubated, when they would have to move him or lift him, they talked to him like he was a human. It was just beautiful.”

Dr. Marshall gives the credit right back. 

“His family’s membership in our health care team was really fabulous. How they interacted with the health care team was a model for other families.” Dr. Marshall said. “The family was always there and always present. They were always pleasant despite the tenseness of the situation. I think the point really is that a collaborative family can make patients better. Not just be there, but literally take part in the patient's care and help them heal. And his family was a great example of that."

Today, Caleb is looking ahead to the future. He will soon begin coding courses in hopes of becoming a computer software coder. 

“One thing that I admire about Caleb is his resilience,” his mother said. “I think that throughout the whole thing, he's always kept his positive attitude. He's always been a happy kid. He handles it better than we would for sure. He’s not angry. He's not bitter. He just rolls with the punches.”

Cook Children’s employees Ashley Pagenkopf and Danny Peltier were in for a big surprise Tuesday when Kidd’s Kids announced their families are going on an all-expenses-paid trip to Walt Disney World!

Every year, Kidd’s Kids takes 30 to 50 children with life-altering or life-threatening conditions and their families on an all-expenses-paid, five-day trip to the magic kingdom.

Emergency medicine physician Dan Guzman, M.D., who serves as a Kidd’s Kids board member, and Cook Children's team members surprised the two families with the announcement, Disney-themed balloons and pairs of Mickey Mouse ears at the Child Life Zone.

“We’re going to Disney!” said Ashley Pagenkopf, a child life specialist in the Cook Children’s emergency department. “I can’t believe it. None of my kids have ever been and I was 12 years old the last time I went, so it’s really exciting. We wanted to take the girls but we cancelled a trip because it was just too much. None of us expected this!”

In April 2022, Ashley’s middle daughter, Averly, began having seizures and was diagnosed with a glioneuronal tumor. She underwent surgery in August and has been seizure free since. Every three months, Averly visits St. Jude Children’s Research Hospital for follow-ups.

“She’s doing awesome – clearly!” Ashley said. “She’s so crazy strong. Kids are so resilient.”

Ashley said she looks forward to experiencing moments of magic with her girls and other families on the trip.

Danny Peltier, practice manager for Cook Children’s Outpatient Psychiatry, says he also looks forward to building memories with his family at Disney World.

“It’s just something we weren’t able to make happen on our own yet,” he said. "So this is going to be a lot of fun for the family!”

Peltier and his children, Will and Evelyn, have a rare genetic condition called hereditary spastic paraplegia, which presents similarly to cerebral palsy but only affects their lower extremities.

“I’m excited to see their faces once we get through the gates and they can just take it all in,” he said. “It’s going to be a lot of fun!”

Kidd’s Kids is a nonprofit founded by the nationally-syndicated Kidd Kraddick Morning Show based on 106.1 KISS FM in Dallas-Fort Worth. The annual Kidd’s Kids trip is made possible by donations and an army of volunteers, including doctors and nurses who make the trip to help the families. 

“We take a team of physicians, nurses, paramedics, child life specialists and respiratory therapists,” Dr. Guzman said. “We go and serve the kids.”

Dr. Guzman says oftentimes the children and families who go on the trips have been patients at Cook Children's. The medical team’s goal is to make sure that the children enjoy the parks without having to worry about any medical needs. If any issue does arise, the team is there to help the children get through it safely. 

“To be there, to enjoy it, to watch their faces and see that love – ah, it’s amazing - you can’t script that at all!” Dr. Guzman said.
 

Our Child Life teams utilize in-kind donations every day, all day. From stocking playrooms, celebrating birthdays, offering comfort, providing distraction, and meeting basic needs, donations are the backbone of serving patients and families.

Back in 2005, I began a Community Relations Internship at Cook Children’s alongside Kat Davitt, who at the time was the Community Relations Specialist. One thing has not changed over all these years: the generosity of the community is paramount to serving patients and families at the medical center. During my internship, I got a front-row seat to the vital role that donations play day in and day out. I also got to see the raw joy donations and gifts brought to patients and families. 

Over time, the job titles, employees that handle donations and departments have changed. Currently, Megan Hodges-Cook is our Community Programs Coordinator within the Child Life Department. She serves in one of the most important jobs within our department – she collects, sorts, and distributes all our donations along with coordinating all our special events for patients and families.

Every day in the Emergency Department, I hand out Legos to the kiddo that just made it through a really difficult procedure or I bring a fidget to the kiddo that just needs something to keep their hands busy.

We hand out stuffed animals, playdoh, crayons and Hot Wheels to normalize the environment that otherwise brings anxiety and fear. Donations change the atmosphere and offer peace and joy amid the hardest moments in a family’s life.

“I’ve seen many patients who just feel awful, and the moment they receive a toy or art project, their demeanor changes,” Hodges-Cook said. “They can begin their physical healing because we have attended to their spirit and soul.”

Cook Children’s provides family-centered care, so donations are not only for patients but also for siblings and other family members. We also utilize donations to celebrate birthdays, holidays, milestones, etc. We have full-blown parties and have even hosted a patient’s wedding in our garden!

One of our donors provides birthday celebration items. Her gifts of wrapping paper, gift bags, streamers, etc. probably touch every patient that celebrates a birthday with us.

Hodges-Cook also shared this story about a donor: “We have a family who brings backpacks once a year in honor of their daughter. A year after receiving a backpack, another family mailed the backpack they received filled with similar items and a note describing how the backpack fulfilled their needs and lifted their spirits when they were in crisis. So the legacy of this little girl has started a domino effect of giving.”

 “Hands down the best part of my job is that I am the only person who gets to witness the joy of the giver (because so many people are joyful in giving), the joy of the receiver when I pass out donations to patients and the joy of the staff who get to share donations with patients and families,” Hodges-Cook said.

Needs

We rely on donations year-round and use them throughout the system including outpatient clinics, urgent cares, neighborhood clinics, and within our therapy settings.

Currently, we receive 70% of our annual donations during December. However, because of this, we have gaps in our needs that often need fulfilling throughout the year. Our gaps include needs for specific age groups or high-demand items that go quickly. Infants and adolescents experience the highest gaps in donations.

• About 25% of our daily population is infants. Items like teethers, rattles, and Wubbanubs/pacifiers are one-time-use items and we often don’t have enough. We also need light-up infant toys regularly.
• Adult-sized items in clothing and adult coloring and activity books are always in short supply for our teens and caregivers.
• We have ongoing needs for clothing sized from Infant to Adult XXLG. We utilize many gender-neutral comfort clothing like sweatpants and t-shirts and underwear regularly to meet the needs of patients and families.
• Our high-demand items include coloring supplies, playdoh, decks of playing cards, sensory items (fidgets, kinetic sand, and slime cups), Hot Wheels cars, Lego kits, toiletries and clothing.

Some things to remember and consider before donating to the hospital:

• Due to the immunosuppressed nature of the patients we serve, we cannot accept used items. This includes any items that are in “like new” condition.
• Out of cultural humility to the diverse population we serve, we cannot accept religious items.
• We cannot accept items that are violent or rated anything higher than E for Everyone (video games) or PG (movies).
• Due to privacy and infectious control reasons, donors are unable to pass donations/gifts directly to patients.
• We ask that all donations are unwrapped so we can best match them to patients.

You are able to give online. You can use this special Christmas in July wish list: https://www.amazon.com/registries/gl/guest-view/2W1H6ULYM5O3L

In Fort Worth, you can bring all donations to the Main Entrance of the hospital located at 801 7^th Ave, Fort Worth, Texas 76104 where you will find a donation bin. For any questions or to schedule a time to bring a larger donation, you may email childlifedonations@cookchildrens.org.

To make a donation at Cook Children's Medical Center - Prosper, email childlifeprosper@cookchildrens.org.

You may also donate to the Cook Children's Health Foundation here and designate your gift to Child Life.

Thank you for your generosity as a community! We are humbled to serve patients and families and recognize that we could not do much of our job without the generosity and kindness of our communities. Please consider donating knowing that you are changing the atmosphere of the medical center, and blessing patients and families immensely!

Twelve-year-old Adalyn Gibson rarely gets sick. When she fell asleep early one night on the couch, her mom, Chelsey, thought a late night and cheer practice had taken a toll. After vomiting and complaining of a stomachache along with trouble walking, Chelsey made an appointment with the pediatrician.

“When the pediatrician felt the right side of Adalyn’s stomach, she almost jumped off the table because the pain was so bad,” Chelsey said. “Then she asked Adalyn to jump and when she landed it hurt.”

From a Doctor Visit to the Operating Room

The pediatrician told Chelsey to take Adalyn to Cook Children’s – a place Chelsey had never stepped foot in. A sonogram in the Emergency Department revealed an enlarged appendix. José L. Iglesias, M.D., medical director of Pediatric Surgery, would need to perform an appendectomy on Adalyn that night.

“Everything moved fast – within minutes they were getting her ready for surgery,” Chelsey said. “When I met Dr. Iglesias, he had already done two appendectomies that day. I had complete confidence in him.”

Adalyn’s fear of needles quickly disappeared as soon as the child life specialist worked with her on breathing exercises and distracted her with an iPad. She also felt reassured after finding out how many appendectomies Dr. Iglesias performs each year.

“He took time to listen to me,” Adalyn said. “It was a good experience.”

Dr. Iglesias removed Adalyn’s appendix with minimally invasive surgery by creating an incision in her belly button. Since Adalyn’s appendix had not ruptured, she was able to be discharged and went home the next day. Seven days after surgery, she hiked 5 miles through the Smoky Mountains.

Signs of Appendicitis Versus a Stomach Virus

Dr. Iglesias said appendicitis is a common diagnosis in the pediatric age group and his pediatric surgery team performs about 900 appendectomies each year. He calls appendicitis one of the great mimics of other conditions such as stomach viruses, flu or strep throat since it doesn’t always follow the rules. If the child experiences a big change in bowel habits or a lot of vomiting, chances are the cause is a stomach virus.

Symptoms of appendicitis:

• Vague belly pain in the middle – in the early stages
• More focal pain – right lower quadrant
• Nausea (as inflammation increases)
• Fever
• Appetite changes
• Pain when moving

Once symptoms begin, the appendix gets more inflamed and bacteria takes over. After about 24 to 36 hours, the appendix can rupture which increases the risk of worsening infection and makes removing the appendix more of a challenge. Once ruptured, IV antibiotics are required for a longer course.

“It depends on how the body fights it,” Dr. Iglesias said. “Sometimes the body forms abscesses and can turn septic.”

Risks of an appendectomy include infection, bleeding and damage to nearby structures. The risks go up according to the amount of inflammation. Because of the specialists’ experience, the overall risk at Cook Children’s is very low.

A Thriving Teenager

Chelsey said she knew they were at the right place as soon as they walked in the doors. Adalyn is back to her active self with only a few tiny scars. She is an avid reader and actively involved in all sports especially volleyball, basketball and cheer.

“Everyone at Cook Children’s did a phenomenal job,” Chelsey said. 

In April, patient Kaydence Mixon who was diagnosed with leukemia rang the end-of-treatment bell at Cook Children’s Medical Center surrounded by her family, friends and care team.

Following a heartfelt speech from Kaydence’s dad, Justin Mixon, a big dance party featuring a disco ball and pompoms broke out.

After nine months of treatment at Cook Children’s, the precious 2-year-old has proved she’s strong. But Kaydence’s superpower lies in the joy she spreads as she quickly crawls around the floor or busts a move to some music, all while waving to friends and passersby.

Besides showing what it means to be brave and resilient, “she shares happiness and joy without saying a word, which has taught us that anyone can be kind and help others without even saying anything,”  Justin said.

Surprising Diagnosis

On July 26, 2022, Kaydence came to Cook Children’s for some blood tests in preparation for a heart procedure. The next day, she underwent successful surgery to close an atrial septal defect (ASD), or a hole in her heart between the upper chambers. 

Later that day, Kaydence and her family received her leukemia diagnosis. She began chemotherapy treatment two days later.

“It was a rough three or four days, but we worked to understand the ‘whys,’” Justin said. “We’re faithful people and found purpose in it all pretty quickly.”

“God graced us with a child who could handle treatment so well,” he said. “She has done it with a smile on her face, so we’ve been able to do it with a smile on our faces. That joy has been reciprocated by the staff too!”

Source of Sunshine

Kaydence became quite a celebrity during her time at Cook Children’s. She became friends with other patients on her floor in the medical center and built strong relationships with each member of her care team.

To Kaydence, no one at Cook Children’s was a stranger.

“She’s been the source of sunshine for all of us the entire time that she’s been here,” said nurse practitioner Alan Ready. “Even if they’ve never been involved in her care, staff all over the hospital know who she is. It’s a testament to her and her family.”

When asked about his family’s experience, Justin says he and his wife Natasha Mixon are grateful for the employees who made Kaydence’s experience at the hospital more normal and enjoyable.

“Good things can come from bad situations,” he said. “There are blessings along the way if you’re looking for them!”

Angel Alderete and Yolanda Orduno, of Odessa, know the challenges of navigating the health care system for a child with medically complex needs, especially when living hundreds of miles from the care their baby requires.

Alderete and Orduno’s daughter, Renata Sofia Alderete, was born Jan. 8 with a diaphragmatic hernia, or a hole in the muscle that separates the chest from the abdomen. The couple learned of the complication with their developing baby when Orduno was about four months along in her pregnancy.

A diaphragmatic hernia allows the abdominal organs, such as the intestines, stomach and liver, to creep into the chest.

“It’s very serious and a lot of times lethal,” said Bannie Tabor, M.D., a maternal-fetal medicine specialist and medical director of the Fetal Center at Cook Children’s Medical Center. “It can compress the lungs and prevent them from developing normally. It can push the heart over and prevent it from functioning. A lot of times we see it with other anomalies of the heart or other genetic anomalies.”

Babies born with a diaphragmatic hernia often need immediate breathing support followed by surgery to repair the defect. Some babies require assistance from a heart-lung device called ECMO (extracorporeal membrane oxygenation). But not every medical facility has an ECMO machine or pediatric surgeons that can perform the surgical repair.

Orduno’s obstetrician in Odessa initially sent her to a specialist in Midland who confirmed the diagnosis and told the family their baby would need a higher level of care than could be provided in their West Texas home. That’s when the family was referred to the Fetal Center at Cook Children’s Medical Center – Fort Worth.

As any parent of a child with a complicated medical condition knows, navigating the health care system can be complicated, time consuming and overwhelming. Add to that the need for care in an unfamiliar city, at an unfamiliar medical center, with unfamiliar doctors while hundreds of miles from home, and it’s downright daunting.

That’s where Cook Children’s Fetal Center comes in for parents facing a difficult diagnosis for their unborn child.

“The Fetal Center is like a health-care concierge service for high-risk moms and babies,” said Mandy Little, the fetal nurse coordinator that oversees Cook Children’s Fetal Center. “The goal is to have one point of contact that coordinates and schedules all of their referrals for specialists and tests.”

Helping to Make Patient Journeys Easier

Mothers with high-risk pregnancies or whose unborn babies have been diagnosed with a medical condition often need to see multiple specialty physicians and undergo multiple diagnostic exams and tests during their pregnancy. Many times, these appointments and tests need to occur in a specific sequence so that doctors have the scans and information they need to inform their diagnosis and treatment plan. If the family lives out of town, they’ll often need to relocate to Fort Worth well in advance of delivery.

“Once the diagnosis is suspected or made, they'll be referred to the Fetal Center to be evaluated and receive consultation with all the different specialists,” Dr. Tabor explained. “We'll make a plan for postnatal care and then typically we'll try to relocate the family about a month before their due date. They’ll usually stay at the Ronald McDonald House and then either await spontaneous labor or we'll pick a delivery date.”

Orduno and her baby needed to be followed by a radiologist, pulmonologist, cardiologist, and surgeon.

“I could not imagine being a parent and having a baby that needs a fetal ECHO, MRI, pediatric surgery and craniofacial, for example,” Little said. “If the Fetal Center wasn't here, that patient would most likely have to call those subspecialties or wait for them to call them and the appointments wouldn't be on the same day. There would be different contact people for every clinic, and there wouldn't be any coordination to them. If you are having to call back and forth between different clinics and trying to get appointments on the same day, it actually can be very difficult.”

The Fetal Center main streams this entire process, giving moms-to-be a single contact with a nurse coordinator who knows how to connect the dots between referrals, specialty physicians and their clinics, diagnostic testing, scheduling and even little things like knowing where to park when arriving for appointments.   

This can be especially helpful for families like Alderete and Orduno who live out of town.

Little and the Fetal Center team coordinated all of Alderete and Orduno’s visits. This included coordinating mom’s many referrals to multiple physicians and clinics, scheduling her appointments, helping the family navigate hospital parking and plan accommodations for their long-term stay prior to and following their baby’s birth.

“Once we were at Cook Children’s every day, the hospital kind of kept getting smaller,” Alderete said. “But the first time we showed up, it's like, ‘Oh my God, where do I go? What do I do? Where do I start?’ I want to say that Mandy walked us through everything and sent us as much information as she could for us to be able to find all of these places.”

Renata spent nearly three months in Cook Children’s Neonatal Intensive Care Unit. She underwent surgery to repair her hernia and an additional procedure to insert a feeding tube. Today, Renata is home in Odessa with her mom, dad and 7-year-old big sister. Her recovery continues as the family works to improve her oral feedings.

Alderete and Orduno encourage other parents to never lose hope.

“There's hope,” Alderete said. “They're really good doctors and nurses. Just follow the social worker or whoever you're in contact with. If you need anything, get with them and they'll guide you in the right direction. They won't let you fail. It's just a matter of being patient and having faith and moving forward.”

Orduno spent every day of Renata’s hospitalization at her baby’s bedside and says she learned to take things one step at a time.

“It's day by day,” she said. “Be patient and have faith and the day will come when the baby is ready to go home. You are really never alone. There is always somebody there with a few words that will give you hope and encouragement.”

Sometimes a mother’s intuition can be the difference between life and death. That was true for 7-year-old Ismael Aguilera whose episodes of debilitating headaches turned out to be a life-threatening condition. Ismael’s mom, Karla, questioned the doctor every time she was told he had migraines.

“I knew it was not normal for him to be feeling like that every few weeks,” Karla said.

Ismael went through eight months of episodes including unsteady walking, vomiting, dizziness, sweating, slurred speech and blurry vision. A couple of trips to the local Emergency Department also left Karla and her husband Isack with more questions than answers. Last July, Ismael had another episode, but this time one side of his face drooped down and one side of his body tingled. They once again rushed Ismael to the Emergency Department and pushed for answers. 

Worsening Condition

Ismael’s condition worsened as his mental status rapidly declined and he experienced weakness on his left side. Doctors in their local Emergency Department contacted Cook Children’s and the Teddy Bear Transport team acted fast. Once in the Intensive Care Unit at Cook Children’s, the team intubated Ismael and quickly began testing which revealed he was in a dire situation. Karla remembers hearing the doctors tell her the severity and urgency of Ismael’s condition, but she was in shock and not able to process everything.

“Even though I couldn’t think through it all, I had this feeling that he was going to be fine, and he would leave the hospital walking,” Karla said. “My faith in God got me through.”

They told her that during these episodes he was having smaller strokes but this one was in a different area affecting the basilar artery which can be fatal if not treated immediately. The area included the brainstem which coordinates breathing and maintains alertness. Only an extremely skilled physician can treat this successfully. 

Right Place, Right Team, Right Time

Marcela Torres, M.D., Cook Children’s Hematology and Oncology - Stroke and Thrombosis Program co-director, began treating Ismael with blood thinners to prevent more strokes. She had to strike a delicate balance with the medications – not enough could cause more strokes but too much could cause him to bleed into the vital area of his brain. 

“It is very possible he only had a matter of hours before we would not have been able to save him,” Dr. Torres said. “I remember watching the images of Ismael’s MRI in real time and texting Dr. Gerstle because I knew we needed him right away.”

Ronald Gerstle, M.D., pediatric interventional radiologist at Cook Children’s Medical Center, performed a thrombectomy which came with many risks but was the only chance at saving Ismael’s life. He very carefully removed the clot through a tiny catheter that went from Ismael’s leg to his brain.

“It takes an experienced stroke center with all the resources to perform these procedures in kids this young and in a timely manner so we can save their brains,” said Richard Roberts, M.D., pediatric neurosurgeon at Cook Children’s Jane and John Justin Neurosciences Center.

After the procedure, the team anxiously waited for Ismael to show signs of progress.

“There was a chance Ismael wouldn’t wake up after the procedure,” said Rachelle Herring, M.D., one of Cook Children’s pediatric stroke neurologists who treated Ismael in the ICU. “We were all surprised and thankful to watch him slowly wake up and then talk, move and regain function.”

A Miracle in the Making

After five days, Ismael was extubated. Drs. Herring and Torres checked on him frequently to monitor his neurologic status and assess his level of recovery. Ismael continued to improve at a faster pace than anyone expected. He spent one month in rehab learning to walk and eat again – all while wearing a cervical collar since the doctors suspected his strokes were caused by bow hunter’s syndrome. With this condition, turning the neck compresses the artery and causes strokes.

Two months later, Dr. Gerstle performed an angiogram to confirm the diagnosis. Sure enough, every time he turned Ismael’s neck during the procedure, it began to compress the artery.

Road to Recovery

In January, Dr. Roberts performed a rare procedure fusing Ismael’s head and neck to prevent further strokes. Dr. Roberts placed screws in the cervical vertebrae and a head plate on the base of his skull – operating in an area that was one millimeter away from the artery running through Ismael’s neck.

Since then, Ismael has continued to recover well without any vascular events. In April, he was cleared to remove the cervical collar and continues to follow up with Dr. Roberts and Fernando Acosta Jr., M.D., Stroke and Thrombosis Program co-director.

“He now has an excellent prognosis with a low risk of more strokes,” Dr. Herring said. “His recovery has been miraculous considering where the major stroke was located. We are all so amazed.”

‘Thank God They Knew What to do’

“We needed to be at Cook Children’s all along,” Karla said. “Everyone from child life specialist Madi Mayfield who Ismael called his best friend to nurse Tyler Adair who went out of his way to make him happy with special handshakes and talking about his favorite things to the amazing doctors who got Ismael to where he is today. Thank God they knew what to do.”

Because of the fusion, Ismael will not be able to participate in impact sports or jump on trampolines or bounce houses. This could pose a significant risk of extension or hyperextension of the neck and potentially break the hardware or his bone putting Ismael at risk for strokes again.

But other than that, Karla says he is back to being a normal kid who loves animals, riding horses, playing outside and watching the Steelers play football.

“Ismael has such a caring heart,” Karla said. “I really think God put him on this journey to help others. He has a purpose here.”

To spot the signs of stroke, remember the acronym BE FAST:

Balance - Is there a sudden loss of balance or coordination?

Eyes - Is there blurred or lost vision?

Face - Is one side of the face drooping or numb?

Arm - Is there weakness, numbness or loss of movement in the arms, legs or one side of the body?

Speech - Is speech slurred?

Time - If you or someone you know is experiencing any of these symptoms, call 911 immediately.

The most important thing to know is that strokes happen in children. If something is different or off about your child, seek emergency care.

PGA golfers Paul Haley II and Cameron Champ were here to bring smiles to patients.

Cook Children’s Child Life staff divided up into four teams to decorate and set up the holes – each with a different theme.

All holes have a bedpan at the end – that’s why it’s called the Bed Pan Open!

The number of babies and toddlers who screened positive for marijuana in the Emergency Department at Cook Children’s continued trending up in 2022.

Last year’s data show 33 patients between ages 0-3 whose urine tested positive for a molecule called tetrahydrocannabinol (THC), the main psychoactive ingredient in the cannabis plant. Back in 2019, there were just eight patients from the same age group with THC-positive urine. The number climbed to 13 patients in 2020, and to 29 patients in 2021.   

Doctors at Cook Children’s say the marijuana intoxication cases they see in babies and toddlers are caused by accidental ingestion of edibles. Edibles are marijuana-infused food items such as gummies or other candy, cookies, brownies, beverages and other products. They aren’t safe for children to consume.

The U.S. Centers for Disease Control and Prevention (CDC) cites the longer-lasting and unpredictable effects of edibles, in which the strength of the ingredients might not be known. Ingestion can cause altered mental status, extreme sleepiness, high heart rate and trouble breathing in young children.

“We’re not here to judge but to provide a warning that if you’re going to have these in your home, you really need to lock them up so that kids can’t access them,” said Daniel Guzman, M.D., who works in the Cook Children’s Emergency Department (ED).

Teenagers made up the majority of the 693 patients in the ED who tested positive for THC in the urine screenings last year. Even though there were far fewer younger patients affected overall, any ingestion by babies and toddlers raises concern. To a curious child, a candy or cookie edible looks like something good to eat.

Recreational marijuana use is illegal in Texas. But a product called delta-8, derived from legally grown hemp, is legal to buy and sell as long as THC levels are less than 0.3%. Delta-8 concentrated in a lab can produce a “high” similar to marijuana. Also, low-level THC medical marijuana can be prescribed in Texas for patients with conditions such as epilepsy and multiple sclerosis. 

Medical experts point out that any amount of drug will have a much greater impact on a child’s small body than on an adult. They urge precautions by all caregivers – parents, older siblings, grandparents and babysitters - to prevent the youngest and most vulnerable from swallowing any edibles they happen to find on a nightstand, in a purse, in a vehicle or in other locations. A preschool in Prosper made national headlines last Halloween after four children became ill following alleged exposure to THC.

What are the signs of marijuana intoxication? How is it treated?

Emergency Department

Abnormal behavior, extreme sleepiness and unresponsiveness are red flags for marijuana ingestion. When children come to the ED with those symptoms, doctors try to rule out other possible causes such as infection or traumatic brain injury.

“Unfortunately, we’ve seen an uptick in the number of kids who have had marijuana ingestion or use over the last couple of years,” Dr. Guzman said. If doctors suspect the child might have eaten a marijuana edible, they will ask the parents or caregivers about any drugs in the home.

“It’s a fair question to ask given the breadth of kids coming in with accidental ingestions. It’s not to judge anybody – we just want to know what we’re dealing with so that we can treat it quickly and know what to expect.”

It takes about three hours to get results from THC tests in the urine samples. Meanwhile, supportive care is provided while the intoxicating effects wear off, usually within about 12 hours. Dr. Guzman said the medical team will monitor the patient’s vital signs and fluids, protect the airway, and watch for worsening symptoms. If the patient’s breathing rate becomes short and shallow, he said, extra oxygen or a breathing tube could be needed.   

Children diagnosed with marijuana ingestion can typically be discharged to go home from the ED after they become alert, act playful, and resume eating and drinking, Dr. Guzman said. More serious cases require further care in the Medical Center.   

Admitted to the Hospital

Kyle Brady, D.O., a pediatric hospitalist at Cook Children’s, said sometimes it takes longer for young patients’ bodies to eliminate the drug. They remain extremely sleepy. The medical team waits and observes. An electrocardiogram (EKG) may be needed to measure the patient’s heart rhythm during recovery. 

“The big thing is doing neuro checks and making sure they’re arousable,” Dr. Brady said. “With the ingestive THC, your liver has to process that chemical, and it just takes time. The smaller you are with how strong some of these compounds are, it can be a few days that we see them in the hospital.” 

Severe cases of marijuana ingestion are linked to high concentrations of THC, he said. “It can be very scary and worrisome to both the parent and the provider,” Dr. Brady said.

Before he will discharge a patient from the hospital following marijuana ingestion, Dr. Brady wants to see that they’re completely awake, playing, eating and able to crawl or walk appropriately for their age. 

What safety tips do the experts at Cook Children’s recommend? Keep marijuana edibles locked up and stored out of reach. And make sure babysitters and grandparents understand those products are harmful to children, even though they look attractive.

“A little kid should not be ingesting THC, and if you as a parent are using it recreationally, you need to use it responsibly and you need to treat it as you would any kind of alcohol product or any kind of household chemical,” Dr. Brady said.

Dr. Guzman pointed out that parents and caregivers must take steps to keep their children safe around firearms and swimming pools. Safety measures apply to marijuana edibles too.

“It’s all about access,” he said. “If we can be responsible adults when it comes to any of these injury prevention areas, then we can keep our kids from getting hurt.”

If you think your child has ingested marijuana, get medical help or call the Texas Poison Control Center at 1-800-222-1222. For more information: Marijuana Edibles - Texas Poison Center Network (poisoncontrol.org)

Patients admitted to the Cook Children’s Neonatal Intensive Care Unit (NICU) can spend days, weeks or months there. No matter the amount of time spent there, the connections built between the tiniest patients, their families and their care teams last a lifetime.

For the first time since 2019, the Cook Children’s NICU hosted its annual reunion on Sunday, April 30 to celebrate those connections.

The NICU reunion allows Cook Children’s former patients and their families to reunite with their care teams, including nurses, physicians, therapists, child life specialists and more. The care teams spend a significant amount of time with their NICU patients and their families while they’re admitted to the hospital and they always look forward to seeing how the former patients are doing after they are discharged from the medical center.

The NICU reunion marks milestones and celebrates the achievements and successes of each of our patients.

Among the over 680 excited attendees was the Dorsey family, who spent 216 days in the Cook Children’s NICU with their son, Bryan.  

Bryan was born at 23 weeks weighing 1 pound, 3 ounces. During his stay in the NICU, he spent the first 100 days of his life on a ventilator, underwent several procedures and received 14 blood transfusions.

“He is a fighter!” said his mother, Natalie Dorsey. “Bryan was discharged from the NICU on one liter of oxygen and feedings via G-Button but was able to move past those supports rather quickly. He is a very healthy 4-year-old who attends school and plays T-ball.”

Dorsey said she looked forward to reconnecting with friends at the 2023 NICU reunion.

“I looked forward to seeing familiar faces of people who made a huge impact in our life,” she said. “The last reunion we went to, Bryan was still on oxygen.”

Dorsey added, “Our NICU friends are still some of my most favorite people. My overall experience with Cook Children’s has been phenomenal. After living the NICU life, I decided to give back as a volunteer and now I’m an employee!"

As the parents as partners coordinator, Dorsey often has the opportunity to share stories from her family’s journey at Cook Children’s. 

“All my best stories come from our NICU days!” she said.

The Cook Children's Creative Artist in Residence Programme (CARPE) offers opportunities for expression and control through a variety of artistic media. Through painting, music, writing, dance, theater and other artistic exploration, patients and families at Cook Children's connect the creative arts with the art of healing.

From Reporter Kevin Reece:

"Artist Sydney Peel is a former patient herself and is using her own brand of magic to help pediatric patients.

Cook Children’s Medical Center is in the business of saving lives. It takes a dedicated and intricately trained team to do that. 

But it is also a team that includes a rolling cart filled with paints, brushes, stickers… and plenty of glitter. 

‘Oh, for sure,’ said Sydney Peel when asked if glitter was indeed part of her cache of supplies.

Peel is the resident artist at Cook Children’s. On any given day you can find her pushing that cart from room to room offering pediatric patients a much-needed break from the sometimes less pleasant visit of doctors and nurses."

By Eline Wiggins

Formerly-conjoined twin AmieLynn Finley went home on Friday for the first time to join her twin sister JamieLynn, parents and the rest of her family.

In January, JamieLynn and AmieLynn made history as the first conjoined twins to be surgically separated at Cook Children’s. The girls were conjoined at the chest and shared a liver. Their 11-hour surgery involving a team of 25 medical professionals, including six surgeons, made headlines around the world.

Amie, the quiet twin compared to feisty JamieLynn, has made huge progress even though her journey has been more difficult. While JamieLynn went home on March 21, Amie stayed at the Cook Children’s Neonatal Intensive Care Unit (NICU) to recover from a recent surgery to improve her chest incision and create more space for her heart, diaphragm and lungs.

On April 7, Amie left the hospital in a car seat with her parents, Amanda and James Finley, JamieLynn, two older siblings and cousin. The family shared hugs and tears with the girls’ care team as they loaded their stuff for the last time in their minivan. Today, the whole family is together, in their own home, at last.

“This is kind of the beginning again,” James said as he cradled JamieLynn. “Surgery was one beginning and now we’re going home to another beginning.”

“It’s definitely a weight lifted,” Amanda said. “I’m excited and happy, it’s a lot of emotions. We still have a long way to go.”

Both girls will have some work to do, including rehabilitation, to help them reach their full potential. When the twins were conjoined, Amie developed scoliosis as she had a natural inclination to lean back and pull away from JamieLynn. The girls’ care team hope they will grow up healthy, happy and independent young ladies with their amazing family.

“It is a blessing to watch the girls heal through a major operation, and see the various milestones such as being weaned off of their ventilators, then oxygen; watch as their intestines start to tolerate increasing feeds and then watch as they learn to feed orally,” said José Iglesias, M.D., FACS, Medical Director and Lead Surgeon at Cook Children’s.

“Both girls are so tough!” said Brianne Galvan, RN, the girls' nurse in the NICU. “They went through some pretty tough times but came out smiling in the end. It was amazing for me to see their resilience and to be a part of their story! I will miss their sweet faces and smiles tremendously!”

Amanda and James have spent a lot of time at the NICU since the girls were transferred there shortly after they were born in October. At their Fort Worth home, the girls will finally share the same room again.

“I’m so excited for the girls to be able to assimilate into their new home with their entire family 24 hours a day. My wish for them is that they get to experience all of the normal joys of family life that they haven’t been able to experience in the hospital,” said Neonatologist Fran Lynch, M.D. “These girls are truly remarkable and I can’t wait to see what they accomplish in their lives moving forward.”

Conjoined twins are estimated to occur in only 1-in-200,000 live births. JamieLynn and AmieLynn are omphalopagus twins, meaning they were joined at the abdomen and shared one or more internal organs.

“With so many steps in their journey it reminds us how big and how great our Cook’s Children’s family is to help them achieve milestone after milestone,” Iglesias said. “I’m proud of the loving and attentive family and proud of an amazing team is probably the best summary I have.”

For those wishing to assist the Finley family in this new chapter of their lives, a fund has been created at EECU in Fort Worth. The family also has a baby registry at Walmart.

RELATED STORIES:

Formerly-Conjoined Twin JamieLynn Discharged from Cook Children's NICU, Sister AmieLynn Stays to Recover (checkupnewsroom.com)

‘We Did It’: Conjoined Twin Girls Separated at Cook Children’s Medical Center Make History (checkupnewsroom.com)

Q&A: Inside the Historic Conjoined Twin Separation Surgery with Jose Iglesias, M.D. (checkupnewsroom.com)

Megan Chavez realizes that even in the best of circumstances parking often feels overwhelming. As system vice president of Cook Children’s Experience, Chavez strives to see every step of the hospital visit through the patient families’ eyes.

“Some of these families are planning for long days at multiple specialist appointments,” Chavez said. “Many of them are bringing equipment and siblings along with them, in addition to other things they are inherently worrying about. For the families to know exactly where to go and experience a smooth parking process is very important to us.”

The Patient and Family Experience team coordinated family advisory groups which allowed the team at Cook Children’s to understand their needs when designing the new P1 Parking Garage located at the corner of Eighth Avenue and Pennsylvania Avenue. Cindi Coker who has brought her son Clayton to the hospital for 20 years, said parking is critically important and affects every aspect of the experience.

“The patient experience starts before leaving the house,” Coker said. “With Clayton’s complex care needs, we bring oxygen, suction, heart rate monitors and more. More than likely, I have already experienced multiple problems before getting into our van and I am stressed. An efficient parking process makes all the difference.”

Coker worked with Security to provide input on the layout and design of the handicapped spaces. Special attention was given to the amount of handicapped and van-accessible spaces with 10 handicapped and 22 van-accessible spaces throughout the garage. Wide elevators accommodate wheelchairs and strollers.

As patient families enter the eight-level garage with 822 parking spaces, an advanced guidance system with red and green lighting shows them where to park. Parking is complimentary and each level also has a count of how many total spaces are available. Wider lanes and spaces allow for larger vehicles to easily navigate the garage. Electric vehicles have access to dedicated charging stations.

Not only was logistics top of mind when designing the new garage, but how it looked was a priority as well.

“It’s not often you can comment on the aesthetics of a garage,” said Spencer Seals, vice president of Construction, Real Estate and Facility Planning. “This is the prettiest garage in Texas.”

“I hope when the families drive into the parking garage their experience shows them how much we value their comfort,” Chavez said. “Our goal is to always see the world through their eyes so the focus can remain on what is most important – the care of their child.”

View a detailed campus map here.

By Lauren Bridge, MS, CCLS, AYA Child Life Specialist at Cook Children’s Hematology and Oncology Center

Most often, the title “child life specialist” resonates with toddler, preschool and school-aged children. However, our scope of practice spans through young adulthood. I am Lauren, our Oncology Adolescent and Young Adult (AYA) child life specialist. The AYA population includes those diagnosed with cancer ranging from ages 15 to 39.

How is this role similar to other child life specialists?

As a child life specialist, I still provide diagnosis education, procedure preparation, procedural support and general emotional support for coping. All of that education and support is customized to meet the developmental needs of a teenager or young adult.

The medical environment can still be very confusing for our older population and the educational background of a child life specialist allows for breaking down information in easier-to-understand terms.

Let’s not forget play. Play is an integral part of a child life specialist’s role and imperative to coping well in the hospital environment.

What are the unique needs of AYAs?

First, let’s look at the developmental needs of adolescents without a chronic illness. During this stage of development, teens are seeking autonomy, making self-discoveries, learning about their changing bodies and acquiring their own set of values and morals all while their social life becomes a priority.

Throw in a cancer diagnosis and suddenly these developmental needs become increasingly difficult. Autonomy is difficult as caregivers and medical staff are constantly near with instruction, invading personal space. Cancer adds to the confusion of self-discovery. How much of their identity lies in diagnosis or not?

Changes in their body increase as hair is lost, weight fluctuates, menstrual cycles are paused and illness affects their physical well-being. Social life is put on the backburner as immune systems become low, energy decreases and feelings of self-consciousness set in. The sense of invincibility is shattered and many adolescents and young adults question their values and faith during this time.

Looking beyond the age of 18, as AYAs enter young adulthood, developmental needs continue and grow. Young adults continue to seek autonomy and self-discovery, are entering more schooling or the workforce, have increasingly more financial independence and responsibility, are exploring their sexuality, are forming intimate relationships and in some cases are starting families.

Cancer turns these developmental needs upside down. Autonomy is stunted by hospitalizations and the need for help. School or work are disrupted or put on hold. Body consciousness and side effects of chemotherapy become more prominent making exploring sexuality a struggle. As the immune system weakens, emotions run high and the body’s physical exhaustion, many find themselves isolated. Collectively making forming deep relationships challenging.

How can Child Life help?

As an AYA child life specialist, my goal is to help adolescents and young adults cope with new challenges, express emotions, meet developmental milestones and maintain a sense of normalcy.

Recognizing the importance of autonomy, I offer patients as many choices as possible. I, along with our AYA multidisciplinary team, want to give the AYA population a say in what is done to their body. Allowing our patients to share what comforts them, people they want present when ill, how much medical intervention they wish to have and end-of-life wishes give them control in a powerless circumstance.

Most often I can be found holding space in a patient’s room offering a safe place for expression, providing port education prior to the procedure, creating a coping plan with a patient, debating who will win a game of pool, exchanging jokes, giving choices for space and autonomy, validating emotions, creating art and having some deep conversations.

Building trust with the adolescent and young adult population is not always simple. For this reason, I follow the AYA patients inpatient, outpatient and in the ICU. I have to earn my space in their room. I strive to show up consistently and genuinely. It is with a true sense of honor that these amazing young people allow me to be a part of their care. I am forever grateful for this unique population and their trust in me to serve as their child life specialist.

By Eline Wiggins

Five-month-old JamieLynn Finley is home in her own bed for the first time in her life. 

In January, JamieLynn and AmieLynn made history as the first conjoined twins to be surgically separated at Cook Children’s. The girls were conjoined at the chest and shared a liver. Their 11-hour surgery involving a team of 25 medical professionals, including six surgeons, made headlines around the world.

On Tuesday, March 21, Jamie was discharged from Cook Children’s Neonatal Intensive Care Unit (NICU), nearly two months to the day of her separation. She left the hospital in a car seat with her parents, Amanda and James Finley, and Jamie’s three older siblings. It is a big day for the Finley family.

“We’ve been looking forward to this for a long time,” said the girls’ doctor, Mary Frances Lynch, M.D., neonatologist at Cook Children’s.

While Jamie is starting her new chapter at home, Amie is staying in Cook Children’s NICU for at least a few more weeks. Amie’s journey has been more difficult and she is continuing to recover from a recent surgery that improved her chest incision and created more space for her heart, diaphragm and lungs.

“There were some moments that were scary,” James said.

The twins will be away from each other until Amie can head home, which is expected to happen within a month or so. Jamie has recovered so well since the separation surgery, she’s currently bouncing and babbling to anyone who will listen. She’s going home with a gastrostomy tube (G-tube) to help with her feeding and continued growth. However, by all indications, she’s on her way to being a healthy and happy child.

“We’re excited that we get to get her home,” James said. “We’ll have some good bonding time, but at the same time, Amie is still up there so it’s kind of a double-edged sword. We’re happy Jamie is coming home, but they’re not going to be together for a bit.”

On Tuesday morning, Jamie and Amie laid side-by-side and took a ride in their red wagon as their mom Amanda pulled them down the NICU hallways.

“Hi, sugar pudding,” James smiled and said to the girls. 

The girls are growing up fast and hitting their milestones. Jamie is about to start rolling over, Amanda said. Amie says “hello” and both girls do their best to talk.

Amanda joked that Jamie will miss all the attention she gets from the nurses and health care workers in the NICU.

At home, Amanda is excited to hold the girls in their new rocking chair. The girls have many new friends waiting to meet them too, including Amanda and James’ neighbors.

Between their three older siblings, family and neighbors, the girls will be showered with lots of love inside their own home and in their new nursery.

“Everybody is ready to see them,” James said.

RELATED STORIES:

‘We Did It’: Conjoined Twin Girls Separated at Cook Children’s Medical Center Make History (checkupnewsroom.com)

Q&A: Inside the Historic Conjoined Twin Separation Surgery with Jose Iglesias, M.D. (checkupnewsroom.com)

The Surgical Team that Made History at Cook Children's (checkupnewsroom.com)

Garth Brooks is a major supporter of Teammates for Kids, which establishes Child Life Zones across the country. He has been a catalyst for the Child Life Zone at Cook Children's. His impact has been healing for those still here in "the dance" as well as those whose legacy still dances on.

Child Life Zones are interactive patient spaces designed to foster creative arts for patients and siblings. Cook Children's was the home to one of the original Aikman's End Zones, built in 1997. The current Child Life Zone at Cook Children's was completed in 2012. Troy Aikman and Garth both attended the opening of that event. 

The Child Life Zone at Cook Children's includes:

• A state-of-the-art recording studio and broadcast studio with an in-house TV station
• The colorful Flipside Teen (Game) Room
• The Bomar Patient Library 
• A large space for family activities
• A sensory niche for patients who need a quiet, soothing space

The Child Life Zones allow kids a chance to free play or participate in scheduled events, including live game shows.

By Jean Yaeger

Marty Knott, D.O., Ph.D. was AmieLynn’s primary surgeon during the historic procedure to separate conjoined twins, AmieLynn and JamieLynn, on Jan. 23, 2023. Although this was his first time separating conjoined twins, Dr. Knott brought experience in operating on chest wall deformities, congenital malformations of the abdomen and chest, abdominal wall defects, tumors, bowels and vascular anomalies. He has worked at Cook Children’s for seven years.

Here are excerpts from a conversation with Dr. Knott prior to the twins’ separation.

It sounds like the area where these girls are joined is where you work quite a bit. Exactly. That's the interesting thing about it.  The actual surgery parts, if you break them down, are things that we do very commonly -- liver surgery and closing abdominal defects in newborn babies. So a lot of the techniques, skills and experience from other places can all be combined into this unique situation. The actual procedures themselves are pretty common.

How did you prepare specifically for this surgery? We have been meeting within our group but also with other subspecialties such as anesthesia and plastic surgery, as well as all of the different components of the operating room team, such as the certified scrub techs, OR nurses and anesthesia techs. It's one of those things where you have a huge team that comes together and everybody plays their role individually to make things happen. And then there's individual preparation by reviewing the scans and charts and the things that they've gone through so far, to just know what things might come up on that day.

Potentially what’s the biggest challenge? The liver separation part's going to be tedious. But the biggest issue is probably going to be getting their abdominal cavities closed and covered safely, because they do have a shared area from their lower sternum down to their belly button area that is open, meaning there's some separation of the muscle and the skin. Just finding effective ways to get that closed once the division has occurred is probably the most hard-to-predict part. For me that feels like the biggest unknown challenge. Everything else is relatively straightforward.

There are different techniques we use. We have babies that are born with other abdominal wall defects that aren't conjoined who still need some sort of either permanent or temporary closure. We'll use some of those techniques we use in other situations for them too. We’re just trying to figure out what's best and preparing for a variety of different options so that once we actually get them separated, we'll be able to know how best to close those abdominal wall defects or those openings so that the intestines, the liver and the heart are all covered safely.

While they're still conjoined, how does everyone who needs to be there fit around the table? There are a lot of people involved, and the table's not very big. To start with, it'll be Dr. Iglesias and I, and then we have two scrub techs that'll be scrubbed into the operation at the beginning. Our plastic surgeons are there as well. It'll be Dr. Iglesias and I until the babies are separated and then we form into two big full teams after that, one for Amie including Drs. Hamner and Hubli, one for Jamie including Drs. Lodwick and Gbulie.  That will be another set of at least four people around the table for each of us.

Someone steps up, someone steps back? Mostly like that, kind of scooting over and leaning. Most of the time we'll stay on our set sides. Typically, Dr. Iglesias will be on the right side and I will be on the left. We'll just work around that and figure out where everybody fits best.

Normally you operate on only one patient at a time and you can position that patient as needed. Can you speak a little bit about the fact that you may not be able to roll Amie the way you want her, because Jamie's there? They've lived most of the time on the sides where, if you're looking from their feet, Amie will be on the left and Jamie will be on the right. That's their baseline or most common position. So that's where we're going to have them during the surgery because that fits best for what they've tolerated so far. There are definitely some limitations. I always say this: In surgery, we try to use other experiences and techniques to fit into unusual situations. There are a lot of different surgeries where positioning has to change throughout the operation for us to be able to get it completed.

We're having to make some modifications within the surgery to where we can move them around a little and use different angles to get portions of the procedure completed safely. We'll use all of our experience and ideas from other situations that are more common to make that happen. But there are definitely some limitations in being able to do things as freely as we want to. Most of what we need to do while they're still joined will be pretty easy to do from the position that is most natural for them.

How long do you think it might take? Longer than expected, just with logistics of everything. Even though we've practiced multiple times, it'll be different on the real day. What I always tell parents when they ask: It'll take as long as it's necessary to get the thing completed safely. I have a timeline in my mind of how things are going to go, but I don't want to put it out there because it doesn't really matter. It's going to take as long as necessary to get them separated and keep them safe the whole time. We're planning for on an all-day event by the time everything's done.

What would you say to your colleagues at Cook Children’s?  This is one of those cool examples where everybody in the hospital gets to come together and participate. A lot of what we do gets kind of divided into little chunks where there's not much interaction between us. This has required a lot of coordination from NICU, to the nurses who know them well, the respiratory therapists, the anesthesiologists, the surgeons, the plastic surgeons and all our staff. Everybody's getting to play a pretty important role, and I hope that everybody sees the importance of what they do on a day-to-day basis.

Anything else? We're all looking forward to it and just asking for prayers that everything goes perfectly and that they recover well.

Kaitlin Bates and her three young sons heard a loud pop while walking on a nature trail one day last summer. 

At first, Kaitlin thought their stroller ran over something, maybe a snake. Then her 18-month-old son Jace started screaming. Kaitlin was shocked to see blood flowing from a hole in Jace’s knee. The toddler, seated in the stroller, had been shot.   

The Bates family’s trip to a nature center in Wichita Falls on Aug. 11, 2022, turned tragic because someone fired a gun. Was the shooter aiming at the boys and their mom? Or was Jace randomly hit by a stray bullet? No one knows.

Whether or not the shooter intended to cause harm, the consequences were serious. The bullet tore through cartilage, ligaments and tendons, and also chipped off a bone fragment from his tibia. Jace required surgery – followed by months of physical therapy to regain the use of his left leg.

“Jace is so resilient,” Kaitlin said. “It slowed him down for awhile and he had a lot of pain for awhile while, but I think Jace has the beauty of ignorance because he’s so young. He never knew what happened. He didn’t know it was a gunshot.”

Jace was one of 42 children and teens treated at Cook Children’s Medical Center for gunshot wounds in 2022. Most of those patients were ages 11 or older, although some were babies or preschoolers. Five died from their injuries.

Hospital data show that handguns accounted for almost half of the gunshot wounds treated at Cook Children’s last year. Traumatic injuries also resulted from shotguns, BB guns and airsoft guns, which use compressed gas to launch pellets.

In an effort to reduce injuries and fatalities from firearms, the Cook Children’s Aim for Safety® program promotes awareness and responsibility to help protect kids from accidental shootings. The program emphasizes three basic steps:

1.     Safe Storage – Keep firearms unloaded and in locked locations out of reach of children. Use trigger locks and gun safes. Secure ammunition separately.

2.     Safe Children – Teach your child don’t touch if they see a gun or someone aiming a toy gun at others. Teach them to run and tell an adult.

3.     Safe Play – When non-powder guns are in use, remember to never aim BB guns or pellet guns at another person. Wear safety glasses when using a paintball gun, gel bead gun, water bead gun or soft foam gun. Before a playdate at a friend’s house, find out if guns are kept in the home and how those guns are secured.

Daniel Guzman, M.D. understands the Texas hunting culture; he’s a firearm owner himself and respects the Second Amendment. But as a physician at the Cook Children’s Emergency Department, he also knows the danger. Dr. Guzman started Aim for Safety® in 2017 after the upsetting experience of treating a 4-year-old shot on accident by a sibling. The child died from the injuries.  

“No one is here to talk about keeping a gun from anybody, but there are definitely things that we can do to help minimize the injuries,” Dr. Guzman said. “The number one thing that comes with gun ownership is safe storage and responsibility.”   

In Jace’s case, maybe the shooter hit the boy on purpose. His parents think the more likely scenario was carelessness … the shooter pulled the trigger without knowing what or who could be in the bullet’s path. Aim for Safety® wants to keep such tragedies from happening.

Jace can once again walk, ride a tricycle and romp around with his big brothers. Kaitlin and Justin Bates are thankful for their son’s recovery but don’t know if the injury will impact his growth or cause complications when he’s older. Here’s a closer look at events and the care Jace received at Cook Children’s.  

Bullet out of the Blue

The bullet came in at a downward angle, entering through the inner leg and protruding like a knot on the outside of his knee. Kaitlin unbuckled Jace and ran with him in her arms the short distance back to the nature center. She yelled for help.

“There was blood everywhere. Jace’s leg was just pouring blood,” Kaitlin remembers. “I was just looking at him and trying to assess what had happened. I saw a perfectly round hole in his leg.”

Two of Kaitlin’s former schoolmates happened to be there. They comforted the older Bates brothers, who were scared and crying. Someone called 911. Another guest offered a first aid kit, and Kaitlin sat Jace on the counter in the restroom. The two women made a tourniquet and applied pressure with paper towels. But the bleeding didn’t stop.

“Jace was kind of starting to pass out,” his mom said. “He had lost a lot of blood and he had quit crying. He was very still at this point.”   

The ambulance rushed Jace and Kaitlin to a local hospital, where doctors put his leg in a soft cast and lined up transport by helicopter to Fort Worth. Kaitlin knew it was a bad injury, and she wanted to go to pediatric specialists at Cook Children’s. The Emergency Department was ready and waiting to give Jace a scan and pain medication to get through the night.

In surgery early the next morning, two incisions were made to remove the bullet and to flush the wound of residue that could cause infection. Jace was put in a cast from his groin to the toes on his left foot. He went home the next day.

The cast prevented Jace from putting any weight on his leg. Normally a rowdy fireball of energy, the boy couldn’t stand up when the cast came off a month later.

“He couldn’t bend or straighten his leg. It was frozen in that position,” Kaitlin said. “It has been grueling. He's had a lot of pain. and even still, if I pick him up in a weird position or if I'm rocking him and I hold his leg funky, he still will reach down and grab his leg and start crying.”

Physical therapy sessions twice a week in Wichita Falls provided stretching and climbing practice to help Jace improve his strength and range of motion.

Cook Children’s will continue to monitor Jace, who limps when he’s tired. Doctors don’t know how the growth plates in his knee might respond to the injury. Arthritis could potentially be another long-term complication. 

Jace’s parents aren’t anti-gun. In fact, they practice safeguards at home because Justin owns a firearm.

“Being a responsible gun owner myself I never would’ve imagined that someone’s negligence would affect my family in this way,” Justin said. “It is paramount that firearm education is taught in our communities with the understanding that a firearm is a tool that should be operated, maintained and stored responsibly.”

His parents suspect the bullet that hit Jace came from a handgun fired blindly from a neighborhood or city park outside the grounds of the nature center. As of January 2023, the shooting remained unsolved.

“Maybe someone was just shooting up into the air and didn't realize that what comes up has to come down,” Kaitlin said. “I really don't know. There's a lot of yuck in this world, and so maybe someone did it intentionally. But overall, my husband and I really are on the page of somebody shot a gun not knowing what was behind him, which is just as stupid as doing it intentionally.”

Jace getting shot was one of the scariest things his parents have ever faced. They don’t want other families to go through what they experienced. But they rely on faith and see blessings throughout the ordeal. Kaitlin points out that if she had pushed the stroller one step further on the trail, Jace could have been shot in the head or heart instead of the knee. He could have been killed.

“We are constantly praying that the Lord would use this to bring about a mighty testimony in all of our lives, especially Jace’s,” she said. “We pray that Jace would come one day to know how much God loves him and protected him and that Jace would spread that love to all those he encounters in his life. No matter the circumstances, God is still good.”

Access and Risk

As medical director of Aim for Safety®, Dr. Guzman works to spread the three-point message of Safe Storage, Safe Children, and Safe Play through presentations at schools and community events. He and the program have reached thousands of families, provided hundreds of locks and safes for safe storage, and distributed more than 3,000 education and awareness resources.

In 2022, he made presentations to eight elementary schools and six community events in the Fort Worth area. The program also includes online classes offered through the Cook Children’s Center for Children’s Health.

“I wanted to get out there and talk to families and remind them of the importance of storing firearms safely – unloaded and locked in a safe,” Dr. Guzman said. “I’m not here to make a political statement. I’m here to educate families and keep our children safe!”

His goal is to help people understand the risk of gun ownership – similar to the risk of drowning that homeowners can proactively reduce by installing fences and locked gates around a backyard swimming pool.

Frequent conversations with your child are vital. Teach them never to touch a gun they might come across in a purse, nightstand drawer, vehicle or other location. But families also need to put barriers in place to limit access. Dr. Guzman estimates that Aim for Safety® has given away 175 gun safes and more than 1,000 gun locks in the past two years. 

The national Gun Violence Archive website lists 314 fatal shootings of U.S. children ages 0-11 in 2022. Unintentional shootings can be prevented, Dr. Guzman pointed out. He never wants to hear another grieving mother in the emergency room say she didn’t think it would happen. 

“I know my kids like to explore. They’re curious about things. They’re going to play hide and seek and play with things they may across,” he said. “Again, it’s not about browbeating anybody. It’s just about keeping our kids safe.”

Cook Children’s Aim for Safety® presents a non-political educational approach to keeping everyone safe when guns are in a home, The program emphasizes responsibility through three steps: Safe Storage. Safe Children. Safe Play. It doesn’t debate whether guns are right or wrong. It's about protecting our children.

For more information or to register for an online firearms safety course, go to Gun Safety (centerforchildrenshealth.org)

Written by Ashley Antle. 

All babies are special, but 16-week-old twin sisters JamieLynn Rae and AmieLynn Rose Finley are making history in one of the most unique ways possible. On Monday, they became the first conjoined twins ever to be separated at Cook Children’s Medical Center in an 11-hour procedure months in the making.

Conjoined twins are estimated to occur in only 1-in-200,000 live births. JamieLynn and AmieLynn are omphalopagus twins, meaning they are joined at the abdomen and share one or more internal organs. In their case, it’s a liver.

“As far as conjoined twins that reach and stay viable after birth, at least for the first few days, there's really only about five to eight of those per year on the entire planet, so it is very rare,” said Jose Iglesias, M.D., Cook Children’s medical director of pediatric surgery.

Even so, the girls’ story begins like many others.

James Finley and Amanda Arciniega of Saginaw, Texas, wanted to add one more baby to their family of five. The youngest of their three children at the time, 7-year-old James, was elated at the prospect. He’s always wanted a younger sibling and playmate.

Little did any of them know — or expect —their hope for one more would become a gift of two.

“She said that's the baby's head,” Finley said, describing how their obstetrician shared the unexpected news of twins at their 10-week ultrasound. “I was like, ‘What is that?’ and she said, ‘That's the other baby's head.’ And I was like, ‘What?’”

Double Blessing

The revelation of the twins' connection came early in the pregnancy. The 10-week ultrasound showed the babies had little to no separation between them. Images taken at the following appointment confirmed the babies were conjoined. Suddenly, the family’s excitement for welcoming two new additions was covered by a cloud of questions, uncertainty and fear. 

“I would not have thought in a million years that I would have twins,” Arciniega said. “And then conjoined twins on top of that.”

In the months that followed Arciniega enjoyed an easy and uncomplicated pregnancy, save for the many appointments with specialists across the state to determine who best to deliver the twins and what hospital was most capable to care for them after birth.

The couple settled on maternal-fetal specialist Bannie Tabor, M.D., whose practice is located at Texas Health Harris Methodist Hospital Fort Worth in Fort Worth, Texas. He is also the medical director for Cook Children’s Fetal Center. In his 32-year career of caring for high-risk pregnancies, Dr. Tabor has delivered more than 5,000 babies.

Soon after taking Arciniega and her unborn babies as patients, Dr. Tabor reached out to Dr. Iglesias, a longtime colleague, to review the case and discuss the possibility of separation.

“It was a big surprise when I got the first phone call from Dr. Tabor saying he had conjoined twins that he was starting to follow,” Dr. Iglesias said. “At that time they really didn't know the babies’ anatomy specifically. So I said there is a big range of possibilities and we need to see what happened with the initial MRI to make some plans from there.”

Many conjoined twins die in utero or do not survive long after birth because of the nature of their joining and the organs they share. But scans showed JamieLynn and AmieLynn each had their own heart and heart sac, increasing their chance of survival and making them candidates for future separation.

“I think the key thing when we first met the family was they had a lot of anxiety about the situation, what the options were and what they could do,” Dr. Tabor said. “I think I gave them the confidence that, while I could not promise everything would work out, we would do everything that we could and, with everybody involved — from me to the neonatologists to the surgeons — they were in the right place.”

Family Ties

Texas Health Harris Methodist Hospital Fort Worth and Cook Children’s Medical Center have a long history of physical and professional collaboration. Both facilities are located in the heart of Fort Worth’s Medical District along a historical stretch of Pennsylvania Avenue that cattle barons once called home. The two facilities are joined by a skywalk and, in Cook Children’s early days, even shared some utilities. Local neonatologists practice at both hospitals’ neonatal intensive care units (NICUs) and many Texas Health Fort Worth obstetricians, including Dr. Tabor, regularly consult with Cook Children’s pediatric specialists.

“The working relationship between the whole team, that's made possible by the close relationship of the hospitals, allows us to be the center that can provide this type of highly advanced service to North Texas so families don’t have to go halfway across the state or halfway across the country or even to Dallas for care,” Dr. Tabor said.

Early in the pregnancy, Finley and Arciniega also consulted Ben Gbulie, M.D., F.A.C.S, of Posh Plastic and Reconstructive Surgery in Mansfield, Texas, and a member of the plastic surgery faculty at Cook Children’s. They learned of Dr. Gbulie through Finley's mother, whose friend told her of a local plastic surgeon with experience in multiple conjoined twin separation surgeries.

After long discussions with the couple, he pointed them toward Cook Children’s Medical Center.

“I explained to them that traveling for surgery is not a problem, and a lot of people do that,” Dr. Gbulie said. “But if you can get the same quality of care where you live, it's always better because you want to be able to have long-term follow-up. While this is a major, complex operation, it is not something that is beyond what I felt Cook Children’s could do.”

Finley and Arciniega were relieved to hear Dr. Gbulie’s recommendation. The family lives less than 30 minutes from Cook Children’s. To know that they could stay close to home, close to their other children and close to their support system was comforting.

Cook Children’s was also familiar. Two of the couple’s older children have received care at the medical center. Their daughter, Aaliyah, 13, spent weeks in Cook Children’s pediatric intensive care unit (PICU) when she was 7 for a nearly deadly bacterial infection called Bartonella henselae. It’s commonly known as cat scratch fever and can be acquired when scratched by a cat. Big brother, James, is a frequent visitor to Cook Children’s as he manages sickle cell disease. 

“Sometimes we come in here and I’m like, ‘Hey, I’ve seen you before,’ to a doctor that has been around our son or Aaliyah, and they’re like, ‘Hey, I’ve noticed you, too,’” Arciniega said. “So it’s kind of like we’re family here.”

“Everybody’s always treated us nice,” Finley added. “It takes a lot of pressure and anxiety off when you know your kid is going to be taken care of.”

Delivery Day

As the babies grew in utero, Dr. Tabor closely monitored their progress and, together with a team of doctors from both hospitals, prepared a delivery and post-natal game plan. During Arciniega’s third trimester, Dr. Tabor became concerned with the slow growth rate of the babies and determined it was best to deliver them early.

On Oct. 3, 2022, at 34 weeks gestation, JamieLynn and AmieLynn were delivered via C-section at 10:40 a.m. at Texas Health Fort Worth. Arciniega required a vertical incision over the traditional horizontal approach to delivering the babies safely. Both weighed 4 pounds, 7.8 ounces. JamieLynn was the longer of the two, measuring 16.9 inches to AmieLynn’s 16.5 inches.

“It wasn’t an easy delivery, but we made it look easy,” Dr. Tabor said reflecting on that day.

Upon delivery, neonatologists Chad Barber, M.D. and Mary Frances Lynch, M.D., took over the babies’ care in Texas Health Fort Worth’s NICU. Like with any set of identical twins, telling them apart can be tricky and, if mistaken, dangerous in the hospital setting. To help keep their identities straight, Dr. Barber and Dr. Lynch chose a favored color for each girl, purple for JamieLynn and green for AmieLynn, and used Sharpies to mark each baby’s color on one of their nails.

After a month, the girls were transferred to the NICU at Cook Children’s Medical Center where they remain today, still under the care of Dr. Barber and Dr. Lynch who practice at both Texas Health Fort Worth and Cook Children’s. The girls’ color codes followed them there, too, and are used as an additional layer of safety when identifying the babies for medication administration, feedings and individual care needs. They even inspired the purple and green crayon costumes the girls sported for Halloween.

Home Away From Home

In the NICU room, which has been their babies’ home since November 2022, Finley and Arciniega attend to their infants like many other parents of twins — together. It takes two to pick them up, especially considering how they must navigate the tubes and wires that monitor the babies’ vitals and deliver nutritional support. Scripted signs handmade by the NICU nurses hang on the wall, making their private NICU room look a little more like a sweetly appointed home nursery.

The girls lay face-to-face on their sides, carefully and frequently repositioned from one end of their shared crib to the other in order to give equal time on each side. Although currently the smaller of the two, JamieLynn is wide-eyed and alert. Her gaze fixes on and follows those that enter the room. She’s feisty and makes sure everyone knows when she is unhappy. Sister, AmieLynn, is more reserved. She’s often the calmer and more chill of the two.

Together, the beloved girls evoke the attention of their parents who make sure there are enough cuddles and kisses to go around, especially from their protective dad. He’s already planning ahead for the days when young men come calling for any one of his three daughters.

“Every window will have a rose bush underneath,” Finley said with a laugh, but only half kidding.

Their days in the NICU are filled with feedings, naps, diaper changes, baths and a number of therapies to help with mobility, strength and eating. The girls respond especially well to music therapy and love it when Grandma sings to them during her visits. Their siblings, brother Isaiah, 15, Aaliyah and James, visit regularly, too. James loves to entertain them, and the girls respond with delight.

Their face-to-face positioning makes feedings and diaper changes a challenge, but nurses have developed creative workarounds to accomplish both. Most of the time they can be bottle-fed one at a time by a single caregiver, with AmieLynn often waiting patiently until sister is satisfied. When patience runs out, feeding is a two-person job.

The older they get, the more they move their limbs. It’s not uncommon for one to unintentionally punch and sometimes anger the other. The girls wear mittens to protect each other from scratches.

All the while doctors monitor their progress, study their anatomy and plan for the enormous task of separation. 

Journey to Separation

The timing of conjoined twin division varies from case to case and primarily depends on how complicated the anatomy is. In the girls’ case, their anatomy and growth support a surgery date sooner rather than later.

While the girls are thriving in the NICU, they are not growing at the same rate, partly because they share some blood supply.

“One is stealing groceries from the other, basically,” Dr. Barber said.

AmieLynn is beginning to develop scoliosis. Feedings are becoming more and more challenging with their size, mobility and face-to-face proximity. While separate, their hearts are exceedingly close together and grow ever closer as the girls age.

“They're pretty much at their maximal, I like to say, baby stretchability,” Dr. Iglesias said. “So their skin is pretty stretchy. Their abdominal walls are stretchy. We've got the benefits of using that. By separating early, they're not going to be as used to the loss of having essentially part of you that is different, so hopefully, that transition will be better. There are not very many more benefits to waiting longer versus doing it now.” 

At nearly 4-months-old, the time is right.

It’s taken months of planning and collaboration. Countless hours have been spent building a comprehensive medical team, studying scans of the girls, building models of their anatomy, mapping out potential surgical solutions, identifying the what-ifs, troubleshooting potential problems, inventorying equipment needed to accomplish the surgery, preparing the operating room (OR) and rehearsing the carefully choreographed surgical production. Dr. Barber estimates there have been at least 100 medical professionals, from physicians to nurses to therapists and other clinical specialists, intimately involved in the girls’ care and surgical planning.

“I think the teamwork is a great point to bring up because it's everything,” Dr. Iglesias said. “It takes a huge team to get all of this working as smoothly as you can make it, given the unknowns that we'll have. Having everybody open and honest talking to each other regardless of their position, that's the definition of teamwork.”

The surgery comes with great risk and a number of unknowns. Because they must dissect the liver, an extremely vascular organ, bleeding is a concern. A significant risk of infection also exists, for which the twins will be monitored weeks into recovery. Doctors are unsure of how the babies’ hearts will respond to their new anatomic position as the girls lay on their backs for the first time in their lives. Then there are questions about how to best close the abdominal wall, many of which can not be fully answered until separation is accomplished. The girls may require additional surgeries to complete closure and reconstruction.

“In order to prepare for this, it's a lot of practice, practice, practice and more practice, trying to really think of every possible scenario so that we're not surprised by anything,” Dr. Barber said. “There's always going to be unexpected things, but if you're prepared for the worst possibilities and the most unlikely outcomes, then you can hopefully not get too caught off guard.”

For their part, mom and dad pray, leaning on the same faith in God that carried them through when their older children faced medical crises.

Separation Day

Monday, Jan. 23, 2023. JamieLynn and AmieLynn are ready for their big day. Thanks to their NICU nurse, they’re sporting fresh mani-pedis in their signature purple and green to help identify them in the OR.

Before the sun rises, family and members of the medical team gather in the girls’ NICU room. It’s calm and quiet as mom and dad steal a few final pre-surgery kisses from their babies. Grandma sings softly. Others pray. The girls are awake, content and comfortable. Just before 7:30 a.m., they begin their journey to the OR.

Inside the OR is a sea of medical professionals: three anesthesiologists, four pediatric surgeons, two plastic surgeons and about a dozen other clinical professionals. They are separated into two teams, one for each girl. Those in purple scrub hats belong to JamieLynn’s squad, while Team AmieLynn dons the green. Everyone will work together until the babies are separated, then each team will focus solely on their assigned baby.

“The reason that's important is because you need focus,” Dr. Gbulie said. “You want to minimize room for errors and the risk of confusion. So little things like color-coding everyone and everything minimizes the risk of giving the wrong medication on either side. It's truly a community effort that involves a multi-specialty team.”

The first few hours involve inserting central lines for delivering anesthesia and placing breathing tubes. Then, sedation begins. The process is slow and methodical.

“When we're talking about taking care of conjoined twins compared to taking care of just a single baby, one of the biggest questions is what is shared, and there does seem to be some shared circulation between the girls,” said Chandra Reynolds, M.D., the lead Cook Children’s anesthesiologist on the surgical team. “What is the response going to be for baby B when we give baby A certain medication? It’s a very slow and stepwise approach until we better understand what happens to one when the other receives medication. The key thing is to give one baby a certain amount of medication, watch and wait for a while to see how things are going and, based on that response, we can give her sister a certain amount as well.”

Once the girls are safely asleep, the surgeons begin marking incision lines. At 12:28 p.m., the separation officially begins. Guided by plastic surgeons, they are careful to make cuts that give the girls’ abdomens the best chance of closure.

First, surgeons open the abdominal wall and dissect the lower part of the sternum and the liver. A little under two hours in, the family receives word that the girls’ shared liver is separated. The private waiting area where the family anxiously awaits news of progress erupts with cheers. Finley and Arciniega embrace.

Surgeons painstakingly work layer-by-intricate-layer until they reach the backside of the abdominal wall where they complete the dissection.

The update everyone’s been waiting for comes at 3 p.m. JamieLynn and AmieLynn are officially separated and on their backs. Tears and shouts of praise flow from family and friends in the room. Their relief is palpable.

“I want to tell you that all of the people in there taking care of them cheered even louder than this,” said the nurse delivering the news, followed by laughter from the family.

There is still a long way to go.

“Once the babies are finally physically separated, then we have to initially look for other additional anomalies and see if there is anything else going on,” Dr. Iglesias said. “We transfer one baby to the other bed where one surgeon will follow and an additional surgeon will pick up with the other and continue to do the evaluation.”

Once each baby is ready for closure, their assigned pediatric surgeons, Dr. Iglesias for JamieLynn and Marty Knott, D.O, for AmieLynn, begin closing the chest and abdomen. Plastic surgeons Dr. Gbulie and Eric Hubli, M.D., Cook Children’s Surgeon in Chief and medical director of craniofacial and cleft surgery, assist with skin closure.

By 6 p.m., the surgery is complete. This time Dr. Iglesias, Dr. Gbulie and Dr. Knott deliver the news to the family.

“We did it,” Finley said in response. “I don’t know what I did, but we did it.”

To this Dr. Iglesias replies, “You trusted us. That’s what you did.”

All the while, neonatologists Dr. Barber and Dr. Lynch stand by for the girls’ post-surgery return to the NICU.

One by one, the sisters exit the OR on their way back to their familiar home away from home in the NICU. For the first time in their lives, they lay on their backs, each in their own crib. The family gets a momentary glimpse from afar as the girls are wheeled past the waiting room, and cheer them on as they pass. About an hour later, mom and dad are able to join the girls in the NICU.

The first look at their twins in separate beds brings a wave of emotion. For the first time, they must divide their attention between the two. They start with JamieLynn. Arciniega places her pinky finger in her baby’s hand.

“It’s OK, Mommy’s here,” she whispers.

Then to AmieLynn. Finley gushes about her strength and how proud he is of his quiet fighter.

It’s a monumental moment, but none of the physicians are ready to say “mission accomplished.”

“The challenges the girls may face after surgery are very difficult to fully prepare for,” Dr. Lynch explained. “We do still have some unknowns as far as how their shared vasculature and their shared anatomy and positioning over these last three months will affect them. As Dr. Barber alluded to earlier, we have to prepare for many different scenarios. The things that will worry us and that we’ll be the most focused on in the first few days are going to be breathing support and pain control. As you can imagine, this is an incredibly big surgery and pain control will be at the top of our list.” 

They’ll be watching for signs of infection, too.

“The soft tissue usually swells over the first two to three days,” Dr. Gbulie said. “If you get through those two to three days, you're usually OK. That being said, we are going to be going through potentially some bowel and definitely the liver, so there is a relatively higher risk of wound infection and that usually shows up at about five to 10 days.”

Road to Recovery

Recovery is best described as slow.

“I'm sure mom and dad are going to think we're moving in slow motion,” Dr. Iglesias said. “The first steps are going to be healing of the very large incision that is required to separate them. We have to wait for their gut to start to work before we start allowing nutrition to move through their intestines. Some of these things may require staged procedures so the family's ready that the abdominal closure may take more than one operation. We're hopeful it won’t, but that's a possibility.”

They’ll need extensive rehabilitation, too, which will include nutritionists, physical therapists, occupational therapists, speech therapists and more.

Doctors say they’re optimistic but will continue to hold their collective breath until they are waving goodbye to the girls as they leave Cook Children’s for their first ride home.

“I'm very hopeful that they're going to have a good recovery and lead healthy lives in the future,” Dr. Iglesias said. “They're going to have a bit of a ramp up from the recovery, but I think they're going to be able to get there eventually, and very close to normal if not completely normal.”

Until that chapter of this story begins, JamieLynn’s sassy spirit and AmieLynn’s sweet smile remain on full display as their NICU team continues to care for their daily medical, physical and emotional needs. This time, together, but separate.

Cook Children’s is a not-for-profit organization. Donations to Cook Children’s Health Foundation allow us to care for our families when and how they need us. Give today to support patient families like Jamie and Amie. Go here. To donate items at the Medical Center for Jamie and Amie, email AandJ@cookchildrens.org.

For Kevin Greene, business is personal.

Every day that he walks into work as vice president and administrator at Cook Children’s Medical Center – Prosper, his two young sons are on his mind. Greene sees them in every face he encounters throughout the corridors of North Texas’ newest pediatric hospital. They are what makes Cook Children’s Promise to improve the well-being of every child in its care and communities a personal mission, just like he’d want it for his own children.

“I look at every child that comes through these doors like it's one of my boys, and I think that’s not just unique to me,” Greene said. “Everyone here thinks that way. It’s what I’ve always loved about Cook Children’s.”

Greene’s path to leadership at Cook Children’s Medical Center – Prosper began with an internship while on summer break from Abilene Christian University where he studied business administration and biology. His plans back then were to work in medical device or pharmaceutical sales, but a Cook Children’s internship opened his eyes and his heart to the possibility of a much different calling — a career in hospital administration.

“I was just trying to learn more about the industry,” Greene said. “Cook Children’s gave me the opportunity to do a six-week internship in operations and then a six-week internship on the clinical side. I was able to really get the sense of what it means to be a part of an organization where every person I met loved being a member of the Cook Children’s family and were aligned in their commitment towards our Promise.”

That was the first of two summer internships he’d complete at Cook Children’s, followed later by a full-time position in the Information Services department as a project coordinator. In 2013, Greene left Cook Children’s to attend Trinity University where he completed a master’s degree in health care administration and was awarded the coveted Community Health Systems’ full tuition scholarship given to a single individual in each graduating class. The scholarship also guarantees the recipient a residency upon graduation.

That led to multiple administrative leadership roles in various hospitals throughout Texas. Then, two roads converged. Cook Children’s set a path for the development of a medical campus in Prosper, opening the door for a new administrative leadership opportunity. For Greene, the time was right to return to the health system where it all began.

“I always knew I wanted to come back to Cook Children’s,” he said. “I didn't know if that was going to be 20 years or two years, but if there was one place that I was going to pick up for in a moment's notice, it was Cook Children’s. That's what brought my family to Prosper, and it's been so exciting to be a part of this journey for the last three and a half years.”

As a native of Fort Worth, the sight of Cook Children’s signature blue peaks are etched into his memory — literally and figuratively.

“I have a scar on my head that was stitched up in the Cook Children’s emergency department,” Greene said laughing about a childhood injury. “It's a reminder of the full circle moment this is for me. I’ve gone from being a patient at Cook Children’s all of those years ago to now being a father of two who trusts Cook Children’s with my own kids’ health care, and I get the honor of working for a system that has always held a special place in my heart.”

Now Greene is making history under a new set of blue peaks as he leads the administrative team at Cook Children’s newest medical campus. It is only the second time in the health system’s more than 104-year history that it has opened a new medical center, connecting the world-class pediatric care Cook Children’s is known for to families living on the northeast side of the Metroplex, East Texas, and all the way up to the Red River and beyond.

Greene isn’t just working in Prosper. He settled his family there just minutes from the medical center and immersed himself in Prosper community life. Greene is the president-elect of the board of directors for the Prosper Chamber of Commerce, a member of the board of directors for Prosper ISD’s Education Foundation and a member of the Dallas Regional Chamber of Commerce.

He and his wife, Christy, have been married for seven years. The two met at church, and their faith remains the cornerstone of their lives.

“Faith is something that has always been at the core of who we are individually and was the primary component that ultimately brought us together,” he said. “Through all of the ups and downs, our faith has always been our guide. I’m so grateful for the paths God set before us, even the difficult ones, because I know he used them to lead us here.”

Greene’s sons are 5 years old and 6 months old. Like with every young family, balancing it all is a challenge. He credits his wife, Christy, with any success they have in keeping the wheels turning. An avid runner, he often makes the Prosper campus a part of his running path. Greene is proud to work for an organization he says connects the dots between personal and family life and a strong and healthy workforce.

“The beauty of the Cook Children’s family is we are all so intentional in our work, but there's also this balance organizationally where leadership supports and encourages the importance of being present with our own families,” he said. “To have an organization and leadership that supports these values is invaluable in today’s environment.”

Everything for the child

Greene looks forward to serving alongside the 550 team members at the Prosper campus. Together, they will steward Cook Children’s long legacy and keep its Promise to improve the care and well-being of every child in its care and communities.

“In my role, I'm centrally focused on several key areas,” Greene said. “Organizationally, working with our leadership team to create an environment where every child and family member that steps foot on our campus receives world-class pediatric care and a world-class experience. While at the same time building on our culture where our physicians, nurses and support team member feel supported, served and cared for.”

Take a virtual tour of the new Cook Children's Medical Center - Prosper and view images from the ribbon cutting event.

They grow up so fast. One minute you’re rocking your baby in your arms and breathing in their sweet baby smell from the top of their head, and the next you’re carting them off to the doctor for their teen physical and wellness check.

In many ways, for both parents and kids, it feels like an altogether different experience from their yearly infant and child well-checks. But, in reality, it’s not different at all, save for the fact that your baby has matured into a teen who now values a certain level of modesty and privacy when it comes to their bodies. This can make the routine check of the genital area which is a part of every physical a bit “cringey,” as your teen might say. Let’s face it, it’s uncomfortable for parents, too, as they come to terms with their child’s increasing independence.

“I think parents think they're different and I think the only reason that they feel it's different is that, of course, the teenager at this point now does a lot of stuff on their own, meaning they have their privacy,” explained Bianka Soria-Olmos, D.O., Medical Advisor for Digital Health. “The parent isn't in full knowledge of things like bowel habits or genital development and abnormalities because they’re not changing a diaper or helping with bath time every day.” 

What to Expect

When Dr. Soria-Olmos examines the genitals during a patient wellness check — be it for a baby, child or teen — she says she is inspecting for the same things. Is the child following a normal developmental path? Are they entering puberty too early? Are there any visible abnormalities of the genitalia? These exams are general visual inspections. Nothing invasive.

For boys, pediatricians examine the penis, testicles and scrotum. When inspecting the scrotum, they may ask your child to turn their head and cough as the pediatrician feels the scrotal sac.  This helps reveal inguinal hernias or tumors. Slightly embarrassing for your teen? Yes, but absolutely necessary. Undetected inguinal hernias can rupture and be very painful, or even dangerous, for your teen.

Inguinal hernias are particularly dangerous for teen boys playing sports, as a direct blow to the genitalia could lead to hernia rupture. This is why most teen boys are required by their school to have physicals prior to playing contact sports, but they’re important even if your kiddo isn’t suiting up each week for Friday night football.

“I remind my parents of kiddos who say, ‘I'm not playing sports, so I don't need that check,’ that we still need to make sure that we have a normal anatomy and that we don't have a hernia,” Dr. Soria-Olmos cautioned. “Because an undiagnosed hernia, even if not playing sports, can be dangerous.”

Girls will also undergo a visual exam of their genitals to make sure their development is coming along at a normal pace. Unless there is a complaint of pain or other concern, Dr. Soria-Olmos says teen girls do not need an internal gynecological exam. The American College of Obstetricians and Gynocologists recommends women begin having regular Pap smears at age 21.

Alleviating Embarrassment

You can help your teen gain some level of comfort with these exams by talking to them prior to their physical about what to expect and why these checks are necessary. Dr. Soria-Olmos makes this discussion a regular part of her patients’ yearly wellness checks as they grow and mature. She also uses it as a springboard to talk about body safety and the difference between an appropriate medical exam under the consent and supervision of their guardian versus inappropriate touching.

In addition to a genital exam, all of the normal body system checks occur, too — ears, eyes, nose, throat, mouth, abdomen, back, legs, arms and thyroid glands. You’ll hear the same questions about your teen’s nutrition, sleeping habits and physical activity as you did when they were younger. If mom or dad has expressed concerns or the doctor detects any red flags about mental health, sexual activity, alcohol use, drug use, smoking, signs of an eating disorder or other risky behaviors, your pediatrician may broach these subjects with you and your teen.

“We only talk about this when the physical is done,” Dr. Soria-Olmos said. “And then always gauging the parent’s comfort for allowing their teen to have a conversation with or without the parent in the room.”

If you have a concern about your teen, or feel they may be more comfortable talking to the doctor about an issue, it’s okay to alert your pediatrician ahead of time so that they are aware your teen might have something they want to discuss.

“Ideally, I try to foster this type of open communication,” Dr. Soria Olmos said. “We are all here together to help the child. It’s important that mom, dad and doctor are all on the same page about what is going on with their teen.”

While this new phase of life may be tricky to navigate and, at times, uncomfortable for both you and your teenager, it shouldn’t deter either of you from getting these important health checks. In addition to protecting their health, it teaches your teen to be responsible for taking care of their bodies as they move out from under your wings and into adulthood.

By Ashley Pagenkopf, MS, CCLS, Child Life Specialist at Cook Children's

The last few years have been filled with collective challenges. The pandemic seemed to touch every single person in some way. It was the first experience of my lifetime that seemed to affect every single person I know.

We seem to be coming out of the grief and fog, but some lasting changes and effects will forever remind us of this time. Yet, in the middle of a pandemic, life continued to happen. Babies were born. Family members received new diagnoses. Some of us said goodbye to those closest to us. Joy and sadness shared space just like they always have and always will. 

When 2022 began, I filled out my yearly “dream guide” and walked into this year with joy and excitement to leave the intensity of the past two years behind. I wanted a break from the hard and literal constant changes. For our family, this year was a mile-marker year. My husband and I celebrated 15 years of marriage, and I entered my fourth decade of life. I was ready – ready to celebrate at every turn and really enjoy this year.

Grief and Grace

At the end of March, our world changed yet again. My middle daughter had a seizure and was diagnosed with a brain tumor. Time stood very, very still. Only a week after her first seizure, my grandfather (who I truly believed would live forever), died unexpectedly. We found out about her tumor two days before my grandfather’s funeral. 

I’ve never really known grief like I knew that weekend. It was physically painful. I remember wondering if the pain would ever subside or if it was going to be my new normal. There were many moments I could not breathe. My girls were devastated over the death of their great-grandfather, and we still had to tell them about a tumor. I just thought that pandemic was hard. This was a new level.

For the next several months, my daughter endured tests and imaging, and we talked to countless doctors to decide our next steps. We spent the summer in many, many consults and trying to make huge decisions.

At the beginning of August on our way to our summer vacation, I found myself completely void of any hope. I was shutting down. The moment I realized I was not okay was in the security line at the airport with the unkindest person that ever existed. 

After several very difficult shifts in the ER where many families lost their precious babies coupled with the intense decisions we were making for my daughter, the one lady working security caused me to completely fall apart. I wondered if she had recently lost someone or watched someone else grieve their child or if her child had a new diagnosis… I had to ask myself this so maybe I could give her some grace. I really had nothing left, though. 

I sobbed as I put my shoes on. My kids stared as I didn’t even try to hold it together. My husband was angrier than ever. I made my way to Starbucks, barely able to catch my breath and not even attempting to hide my hot, alligator tears. Once on the airplane, I proceeded to sit on my coffee that I had set down to put a bag away. Things felt completely hopeless. Life felt unraveled.

Have you looked at this past year and wished it would just end? Have you had one too many phone calls from the school with your kid as the subject? Has your kiddo been diagnosed with a new illness? Did you think that you were done with treatment, only to find yourself back in hard? Has your job felt like it is robbing you of all your energy and sanity? Have you lost someone dear to you this year? Has your world felt like it was ending, and you couldn’t see a way to stop it? Have you had a moment like mine in the airport where you had nothing left for the mean person and then you sat on your coffee?

Embrace Hope Now

I’ve heard a lot of people say recently that they are ready to have 2022 in their rearview mirror. I would be lying if I said I didn’t feel the same way. But I’ve spent a lot of time thinking about this. I am the first to embrace new beginnings. I love the New Year – new goals, new resolutions, new starts. But I have been reminded often that hope is here, now. It is at this very moment. In my desperate desire to leave this year behind and start over, I may miss the very moment where hope meets me now.

Literally, in every hard moment of this year, something beautiful has shared space with it. That something beautiful has often reminded me that hope is here. Hope is defined as “confident expectation” or “forward-looking faith.” Hope reminds us that there is good coming and beauty to be had.

Yet, this year, what I’ve always hoped for has met me in every hard moment. The hope for people who would support me, the hope for strength to shine in my kids in the face of adversity, the hope that I would be able to be present for my family when we faced pain and the hope that I could still find comfort and peace amid grief… All those hopes have been real this year. Thank goodness for those few sips of Starbucks before I sat on it. (Starbucks has provided a great deal of hope in the middle of hard this year.)

While on the said vacation, a wonderful photographer captured our family on the beach of Lake Tahoe. Hope that we could still smile and laugh and find joy met me in those moments. When tears streamed down people’s faces as they shared their prayers and hopes for our family, hope met me there. When my Cook Children’s family extravagantly showered our family with gifts and love, hope was tangible. When my very best friends drove seven hours for my daughter’s surgery and surprised me, hope met me. With every letter and encouragement and tear, I met hope.

What would happen if we could embrace hope now? Hope – the beauty that is to be had – doesn’t have to be next year. Hope is here, now. 

You can be hope to someone, and you can find hope in the simple. You can hand that bag of essentials out the window to the next man or woman you see on the corner and offer them hope. You can pay for the car behind you in the drive-thru and be hope for them. You can smile and ask your cashier how their day is and be hope for them at that moment. 

You can offer the beauty that is to be had – the hope – to those around you. And you can find hope in your next cup of coffee that warms you up. You can see hope in your kiddo that chooses kindness towards their sibling. You can experience hope in the next phone call or text message or next hug that comes your way. You can experience hope the next time your kiddo is brave like you never knew. You can see hope in the way that one tiny candle lights up the darkest room. Hope is here, now.

Video by Tom Riehm. Photos by Lauren Graham and Eline Wiggins.

Media partners may use this content for news stories and broadcasts with credit to Cook Children's.

Football players and cheerleaders surprised patients in multiple departments at the Medical Center to spread some holiday cheer. There were extra smiles from that win over the Houston Texans!

Each child receives a stocking loaded with goodies from the Dallas Cowboys and a special toy provided by the UnitedHealthcare Children’s Foundation.

Under the guidance of Mrs. Gene Jones, the entire Cowboys team has conducted annual holiday visits to local children’s hospitals for the past 33 years – with the last two years being held virtually due to the pandemic.

Media partners may use this content for news stories and broadcasts with credit to Cook Children's.

The sunny personalities and determination of Sophie Worsham and Libby Sponsler shine through as the girls and their families deal with the physical challenges and developmental delays of Down syndrome. 

Sophie, who is 15 months old, has low muscle tone due to Down syndrome and her premature birth. But she can play, babble, smile big and roll wherever she wants to go. Thanks to exercises and occupational therapy, Sophie is learning to sit up on her own. 

Libby, who is 2½ years old, uses lots of words but receives speech therapy to improve her pronunciation. Occupational therapy helped her to start walking just before her second birthday. Libby is a doting big sister who loves to dance, snuggle and express her sassy charm. 

Both girls had their diagnosis of Down syndrome confirmed through genetic testing at Cook Children’s. Both also underwent surgery as infants at Cook Children’s – Sophie for intestinal blockage and Libby for a heart defect. They come in for checkups as they grow and hit milestones.

October is Down Syndrome Awareness Month, and we at Cook Children’s want to share information about the condition, which happens very early in development when the embryo’s dividing cells have three copies of chromosome 21 instead of two. About 5,000 babies are born in the United States each year with Down syndrome, also called Trisomy 21. Characteristics vary but typically include distinctive facial features and some degree of developmental and cognitive delay.   

Cook Children’s geneticist Alexandra Garza Flores, M.D. said people with Down syndrome can have frequent ear infections and hearing loss, obstructive sleep apnea and thyroid dysfunction. Because of their low muscle tone, many babies with Down syndrome need extra support in feeding. Heart defects are common, occurring in 40-50% of newborns with Down syndrome and representing one of the most serious medical problems in early life.  

“With our current medical advances and proactive medical surveillance, people with Down syndrome have the potential for happy, healthy, productive and rewarding lives,” Dr. Garza Flores said. “Things will be challenging and different at times, but we will be with their family every step of the way to help keep their loved one healthy and to ensure that they have access to necessary resources.”  

Dr. Garza Flores outlined the scope of Down syndrome services at the Cook Children’s genetics center, which includes geneticists, genetic counselors, nurse practitioners, case managers, social workers, a dietitian, medical assistants and insurance specialists. 

The genetics team coordinates the diagnostic testing, screenings and consultations, and provides long-term follow-up care. Additionally, children ages 2 and up have the option of periodically attending a special multidisciplinary Down Syndrome Clinic, which is offered every other month. 

Down syndrome occurs in about 1 in every 700 births, she said. Doctors often recognize the signs through physical examination, but confirmation is recommended. “The gold standard is a karyotype analysis,” Dr. Garza Flores said, referring to the blood test that makes the extra copy of chromosome 21 visible.  

Children with Down syndrome share a common chromosomal abnormality. But each child is also unique. Celebrating their resilience and zest for life, we want to feature two perspectives. Let’s meet Libby and Sophie.

Libby’s story

Liberty Joy “Libby” Sponsler weighed 8 pounds, 12 ounces at birth. First-time parents Joshua and Madison Sponsler thought their daughter’s face possibly had features of Down syndrome - a surprise since they had not done a prenatal test. While the rates of Down syndrome babies run higher for moms over age 35, Madison was just 21 years old. The midwife at their birthing center recommended the Sponslers take Libby to the pediatrician the next day. 

The following morning, during the drive from their Bedford home to the doctor’s office, the bluish tinge in Libby’s hands spread to her whole body. They rushed to the Cook Children’s Emergency Department, where Libby received oxygen and was admitted to the Neonatal Intensive Care Unit (NICU) for a week of medical support and numerous tests. She indeed had Down syndrome, and also a hole in the heart called an atrioventricular canal defect. 

Cook Children’s cardiologist Gregory Barker, M.D. explained that the defect involves several heart structures, causing excessive blood flow to the lungs. 

“This results in symptoms such as trouble breathing and poor feeding,” Dr. Barker said. “If left unrepaired, it would lead to irreversible and severe damage to the lungs.”

At 6 months old, Libby returned to Cook Children’s for surgery to repair the walls between her heart chambers and to create separate tricuspid and mitral valves out of one large valve. It’s a complex procedure, Dr. Barker said. 

“The good news is that with appropriate surgical intervention, patients go from having essentially fatal heart disease to having a healthy cardiovascular system,” he said. “Most of our patients get to the point of requiring cardiology follow-up only every one to two years.” 

“We quickly saw a huge change,” Madison said of the surgery’s outcome. Libby no longer needed the medication that stabilized her oxygen level. Libby become more alert, ate better and began to gain weight. She visits Dr. Barker for checkups. 

Texas Early Childhood Intervention (ECI) provides speech therapy and occupational therapy to Libby at home. Occupational therapy helped her learn to crawl and walk. Her therapy these days focuses on the consistent management of stubborn behavior. 

“A lot of it is figuring out what works for Libby and what doesn’t work for Libby,” her mom said. 

Madison said she and Joshua first reacted with shock to the Down syndrome news. But they soon found other families who provided support and helped them adjust their expectations. The diagnosis was scary and overwhelming early on, Madison said, but not anymore.

“The community helped me process everything. Once I was able to process, I was able to enjoy my baby, and it went really well from there,” she said.

Madison acquired the mindset that Libby might not follow certain timelines that other children do. And that’s OK. Libby likes to hold her little sister Ember. She enjoys playdates and music. She demonstrates that people with Down syndrome are capable of reaching their goals, Madison said.

“If she’s trying to stack blocks and having a hard time with her fine motor skills, I tell her ‘You can accomplish it if you want to accomplish it.’”

Sophie’s story

Prenatal screening indicated Down syndrome about 12 weeks into Brooke Worsham’s second pregnancy. Brooke and her husband Mark were already parents of a healthy toddler. But this second pregnancy had more complications: A scan revealed that unborn Sophie had a digestive disorder called duodenal stenosis. At risk for stillbirth due to low flow between the umbilical artery and placenta, Brooke spent six weeks in the hospital under close monitoring. 

Sophie Elaine was born via C-section at 33 weeks, weighing 3 pounds, 8 ounces. The Worshams had pre-selected Cook Children’s as their destination for the surgery Sophie needed. Cook Children’s pediatric surgeon Thomas Rothenbach, M.D. operated when Sophie was just one day old, creating openings to bypass the obstruction in her small intestine. 

About 25% of babies with duodenal atresia (complete obstruction) or duodenal stenosis (partial obstruction) also have Down syndrome. The duodenum, or the first section of the small intestine, fails to develop into a hollow tube in babies born with the condition. 

“Because of this, nothing can pass from the stomach to the small intestine,” Dr. Rothenbach said. “The atresia has to be fixed for the baby to be able to eat.”

Sophie was also born with a hole in her heart that is now considered functionally closed without the need for intervention. Doctors can hear a slight murmur, but for now her heart is not a concern. 

For six weeks in the Cook Children’s NICU, nurses and speech therapists helped with Sophie’s feeding challenges. Then after discharge to her home in Fort Worth, therapists from ECI stepped in. The therapy has helped Sophie learn to eat pureed foods supplemented by infant formula.

Occupational therapy, meanwhile, puts Sophie in poses to improve her strength and endurance. Tools for therapy include pillow props and toys to attract Sophie’s attention while she practices. Brooke calls the therapy a workout. “If we put her in position, she can hold it, but she’s not able to independently sit right now.”

The Worshams are hoping that Sophie can enroll next August in the KinderFrogs intervention program at Texas Christian University, which serves children with Down syndrome and other developmental differences. She’s on the waitlist.

Brooke describes her daughter as social, easygoing and adored by big brother Graham. Sophie is enamored by the ABC Song and her favorite light-up owl, and she’s fierce in striving to accomplish whatever she puts her mind to. She recently started grabbing her bottle and spoon.  

“She’s going to do all the things, but just not in the rate that Graham did it. And so you just sit back and take it day to day and be patient. It’s going to take a little longer, and we don’t feel rushed.” 

Kids with Down syndrome have the same interests, desires and emotions as other children, she pointed out. They want to be included but might need more help or a longer time to finish a task.  

Like Libby’s mom, Sophie’s mom says the diagnosis was scary at first. Her advice? Find a group of other parents raising children with Down syndrome. Tap into their experience and support. Don’t look too far into the future. Be ready for the joy that Down syndrome children exude.   

“Everyone she meets loves Sophie. She fits right into our family. Since she was born, everything has worked out, and our life is not any more complicated than just adding another child.” 

Imagine being the parent of a very sick child. You rush them to the local ER close to where you live in rural Texas. Your baby’s condition is critical and requires a higher level of care than can be provided there. A call goes out to Cook Children’s Medical Center and, within the hour, a helicopter lands just outside your hometown ER. A fluffy brown teddy bear is perched in one of its windows, signaling the arrival of Cook Children’s Teddy Bear Transport.

Out of the helicopter jumps a three-person neonatal and pediatric critical care team including a nurse, respiratory therapist and paramedic. They’re wearing blue flight suits matching Cook Children’s signature blue peaks. A patch on each of their sleeves features a teddy bear in aviator gear and identifies them as members of an elite team.

In addition to their experience and expertise in neonatal and pediatric critical care, the transport team is carrying what amounts to an intensive care unit in three small bags. Inside your child’s emergency room, they get to work stabilizing and prepping your little one for transport. You’re scared, but you breathe a sigh of relief knowing help—and hope—have arrived.

“The hospitals and providers that refer patients to us are often just as excited to see us as the parents,” said Stacy Putman, RT, Teddy Bear Transport director. “They've done everything they can for that child until the minute we get there, and then they see us and they're like, ‘Oh, thank goodness. I can breathe now,’ because they know that our team is going to come in and take care of them and the child. They don’t have the resources we have, which is why they call us, and sometimes they’re hanging on by a thread doing their best with what they have to keep that child alive.”

This scene plays out day after day as Teddy Bear Transport brings the specialized pediatric critical care services of Cook Children’s Medical Center to children’s doorsteps all across Texas, the United States and even other countries—Mexico, Switzerland and Venezuela, to name a few.

Now in its 40th year, the service responds to approximately 4,000 calls annually. Seventy percent of those are for ground transport and 30% for air. Most of the babies admitted to Cook Children’s neonatal intensive care unit arrive via Teddy Bear Transport. Some of the furthest transports are to bring patients to Cook Children’s Hyperinsulinism Center, which is one of only two centers of excellence for the treatment of this rare disorder in the country and one of six in the world.

The Early Years

Cook Children’s transport service began in 1982 with one leased ambulance and a few nurses that would be pulled from bedside patient care to answer calls for local neonatal transports. In 1984, the service purchased its first ambulance. 

In those early years, if a child needed to be airlifted to Cook Children’s, the transport team would hitch a ride in one of the CareFlite helicopters stationed at neighboring Texas Health Harris Methodist Hospital Fort Worth. Back then, members of the transport team also had to use their ingenuity to retrofit adult medical devices to fit children. Not so today as device manufacturers now design equipment specifically for pediatrics.

By 1985, the service was conducting more than 300 transports a year. Two years later, Cook Children’s transport team officially became known as Teddy Bear Air with the purchase of its first aircraft, a Beechcraft King Air 90 with call sign N555TB. The plane made its first flight on Dec. 2, 1987, to pick up a patient in Wichita Falls with crew Cam Dodgin Brandt, RN EMT-P; Paul Shaffer, RN EMT-P; Bela Harvey, RT; and pilots Paul Hook and Howard Schack.

The years that followed saw steady growth in transports and the addition of a number of assets to the fleet and team. 

In 1992, Teddy Bear Air changed its name to Teddy Bear Transport to better reflect the full scope of its mission of providing both ground and air transport. Cook Children’s made the leap from sharing a helicopter with CareFlite to leasing its own helicopter in 2004 and, five years later, the health system moved from lease to own with the purchase of a new helicopter.

Over the years, transport assets bounced around to several Tarrant County bases and hangers due to the growth of the service and expansion of the medical center. In 2011, Teddy Bear Transport settled into its own dedicated base and current home at Meacham International Airport in Fort Worth.

One of the service’s most memorable moments came in 2017. As Hurricane Harvey made landfall on Texas’ Gulf Coast, Teddy Bear Transport was called upon to help evacuate vulnerable patients from Driscoll Children’s Hospital in Corpus Christi.

None of the past and current growth of this service would be possible without generous community donors. Long-time philanthropist and friend of Cook Children’s, Clarabele “Pit” Dodson, is one of them. Donations from Dodson made possible the purchase of several Teddy Bear Transport air assets, including a new jet in 2013. The jet’s tail number—N917TL— is Dodson’s birthday and the initials of her late husband, T.L. Dodson Jr., who was a World War II Navy bomber pilot.

The Making of a Transport Team

It’s one thing to deliver bedside care in the controlled environment of a hospital room outfitted with every medical technology a patient needs and supported by an entire staff of physicians, nurses and medical professionals. It’s another to do the same in the back of a helicopter while speeding through the air and sharing a very tight space with three team members and a patient.

“To be on the transport team you have to be the type of person that can take control of a situation,” Putman said. “Unlike in the hospital, we are out in the field on our own, not around our own doctors or other support systems like radiology, lab, pharmacy and all those people that are standing at your bedside. So you really have to be someone that can take control of a situation and be very confident, not arrogant, but confident in the training, policies and protocols that we've provided for you and in the decisions that you make out there.”

Melissa Irving, a 31-year veteran transport nurse who retired from Teddy Bear Transport in 2016, knows the field medicine nature of the job all too well. She once intubated a prematurely home-birthed baby on the family’s kitchen table before whisking the newborn off to the helicopter for transport to Cook Children’s.

It’s not a job for everyone, but the people who do it well tend to stay in for as long as physically possible.

People like Deborah Boudreaux, RN, MSN, CCRN, LP, CMTE. Over the past 35 years, Boudreaux has risen through the ranks from transport nurse to director of Teddy Bear Transport to her current position as Cook Children’s assistant vice president of nursing where transport services fall under her jurisdiction. But, ask her what she does and Boudreaux will tell you she’s a Teddy Bear Transport nurse first. 

“Transport is really in my blood,” Boudreaux said. “I will tell people I'm a transport nurse and they'll say, ‘No, you're not. You can't do that right now,’ but I just think it's the greatest job in the hospital or outside the hospital because you get to function in a very autonomous role.”

When the transport team arrives on scene, their teamwork kicks in, often without a word spoken. To the outsider looking in, it appears to be a carefully choreographed dance. 

“You work with your team so closely,” Boudreaux said while describing the relationship between team members. “It's just like a symphony. You just work together and do it. You don't even have to tell your team member next to you what you're doing because they already know. It’s kind of groupthink.”

But that symphony actually starts behind the scenes in the Teddy Bear Transport communications center well before the team has boots on the ground. 

The communications center is the logistical hub for transport and home to a bevy of communications specialists, often the unseen and unsung heroes of Teddy Bear Transport. These specialists are responsible for answering calls from referring centers, determining the best mode of transportation based on the patient’s location and acuity, dispatching the transport team and deciding where in the hospital the patient needs to be admitted.

As for air transports, none of them would be possible without skilled pilots. Melissa Irving says Teddy Bear Transport has the best.

“They would never go if the weather was not safe,” Irving said when asked if she had ever experienced a harrowing flight during her time with the service. “Our pilots wouldn’t fly if there was any issue with the helicopter or plane and wouldn’t land if it wasn’t safe. We didn’t ever have to think about our safety because we always had 100% faith in our pilots.”

The next 40 years for Teddy Bear Transport are likely to bring the same growth as the last 40 as the service continues to rise to ensure that all children in the area and beyond have access to the health care resources they need. 

“Cook has become a premier location for many specialty procedures and we have been traveling all over the U.S. to bring those children to the Medical Center,” Putman said. “The health system will continue to get bigger and better and in turn bring many opportunities to the transport team.”

Celebrate Good Times

Teddy Bear Transport will hold a 40th-anniversary celebration for all past and current transport employees on Thursday, Oct. 20, with an open house at its Meacham hanger from 4 p.m. to 6 p.m., followed by a party at another local venue.

Story by Eline deBruijn Wiggins. Video by Tom Riehm.

Hispanic Heritage Month creates an additional opportunity for us to celebrate the culture and contributions of people who are Hispanic or Latino/a. At Cook Children’s, we see the world through the eyes of children and families, of all races, ethnicities and languages. Let’s hear from a few Latino/a and Hispanic pediatricians and specialists at Cook Children's.

Celina Cepeda, M.D.; Ana Rios, M.D.; Javier Gelvez, M.D.; Roberto Caballero, M.D.; Victoria Talamo, M.D. and Bianka Soria-Olmos, D.O. sat down with us to share their journeys to becoming doctors and to hear their perspectives as Hispanic and Latino/a doctors and specialists.

Did you know?

• In the U.S., Hispanics and Latinos are an underrepresented population in medical and health care professions. Only 5.8% of active physicians are Hispanic or Latino/a in the United States.
• The Hispanic and Latino population is growing and currently makes up approximately 19% of the U.S. population.
• In Tarrant County, 30.2% of the population identified as Hispanic or Latino, according to the 2021 Census.
• National Latino/a Physician Day is Oct. 1, a day to raise awareness about the need for more Latino/a doctors.

Meet 6 of our doctors and specialists

Celina Cepeda, M.D., is a pediatric nephrologist at Cook Children's Prosper. She's from Brownsville, Texas and is bilingual in Spanish and English. She enjoys teaching her patients about the kidneys and staying healthy.

“It really makes me happy when patients are Spanish-speaking only and I can help take care of them and they are appreciative of that,” Dr. Cepeda said. “Because otherwise, it's difficult for them to communicate their needs and what they're hoping to achieve for their children health-wise.”

Ana Rios, M.D., of the Cook Children's Infectious Disease team, grew up in Colombia. She says both of her parents were physicians so she always grew up listening to them talking about how passionate they were about their jobs.

“My older brother was diagnosed with leukemia and my parents were the ones who made the diagnosis,” Dr. Rios said. “That made me feel more passionate about becoming a doctor and pediatrician and helping kids like my brother. Eventually, that's what I did.”

Bianka Soria-Olmos, D.O., serves as our Medical Advisor for Digital Health and a Cook Children's pediatrician in Haslet. She has lived in Fort Worth for most of her life and as a child, she went to Cook Children's as her brother received care here.

“I always said I wanted to become a doctor and that one day I wanted to work at Cook Children's,” Dr. Soria-Olmos said. “I love that I was able to fulfill my childhood dream here. I like that we continue to strive to serve this community in the way it has been changing and do the best for the children.”

Javier Gelvez, M.D., of the Cook Children's Pediatric Intensive Care Unit, is from Colombia and was the youngest of eight children. He has been at Cook Children's for 21 years.

“We can inspire other people to be physicians and as my kids grow up I say this is an opportunity to serve,” Dr. Gelvez said. “This is the beauty of a job where you can serve other people and make a living.”

Roberto Caballero, M.D., of the Cook Children's Pediatric Intensive Care Unit, grew up in Mercedes in the Rio Grande Valley of Texas. At the time, his father was the only doctor in town. People came to their house after hours and on weekends needing help. Dr. Caballero is bilingual and said not many days go by that he doesn't have to communicate with patients in Spanish.

“That inspired me to help others and to value what it means to be available to people in need,” Dr. Caballero said.

Victoria Talamo, M.D., of the Cook Children's Pulmonology team, is from Venezuela. She says she enjoys helping people and was inspired to become a physician just like her dad.

“He was like my hero and he was everything to me,” Dr. Talamo said. “I wanted to grow up and be like him. He would come home late at night and share these amazing stories about his day.”

A recently approved drug is giving hope to younger patients living with sickle cell disease (SCD). Crizanlizumab is intended to reduce the frequency of pain crises and limit hospitalization in adult and pediatric patients ages 16 and older with  SCD. 

Patients of Clarissa Johnson, M.D., pediatric hematologist/oncologist and other SCD specialists at Cook Children’s have participated in the clinical trial to determine the dosage for pediatric patients for Crizanlizumab, the recently approved drug marketed under the name Adakveo.

“It’s an exciting time to be in sickle cell disease care,” Dr. Johnson said. “For the first time since 1995, we have options to offer our patients. The research pipeline for sickle cell is open and this new drug is a sign of the times.”

Pain crises are complex and associated with potentially life-threatening complications of SCD. Red blood cells of people living with the genetically inherited disease are sickle-shaped, similar to a crescent moon; and cells become stiff and sticky – adhering to blood vessel walls during circulation.

Healthy red cells are rounded and pliable, designed to flow smoothly through the body and supply oxygen along the way. When sickle cells clump together, they restrict blood flow and can ignite pain and inflammation. The pain can occur suddenly and with enough severity to require days of hospitalization and dosing of powerful pain medication to endure them.

Dr. Johnson’s patient, Kambri Gaut, has suffered pain crises with hospitalization. Her parents say there is little comfort for the pain when crises do happen.

“It gets to you. Especially as a man, you want to fix it and you can’t fix this,” said Kambri’s dad, Kevin Gaut. “Now that she’s older, she can tell you what’s wrong, and what works and doesn’t work.”

Fortunately, Kambri participated in the crizanlizumab clinical trial and experienced success.

How does the drug work?

Adakveo is a monthly IV infusion therapy. Dr. Johnson would prefer something less invasive, but it is an option for her patients.

Kambri visits the infusion clinic every 21-30 days and it can mean she misses some school. Her mother, Brandi, says Kambri does well in school and it is easier to make up missed classwork online.

“She has only been hospitalized twice in the last three years while participating in the trial,” Brandi said. “It is a commitment to meet with the research team and participate in the work they need for the clinical trial; plus, receive the infusions, but we’re used to it. I have no complaints and we plan to let her keep doing it.”

We asked Kambri if she has signals when she might experience a pain episode. “The weather – when it is raining and cold,” she said. “Mostly I live my life and I drink water a lot.”

“Some patients describe sickle cell pain as a glass-cutting feeling as the cells travel through the vessels,” Dr. Johnson said. “The new drug is a manufactured antibody that targets markers on white cells that make the red cells sticky; it disrupts the clumping of the cells together which is what contributes to the greatest pain.”

Living with sickle cell disease

The 13-year-old definitely lives life to the fullest. Kambri is a cheerleader, plays volleyball, and has danced since she was 6 years old. She ran track and played basketball.

“We let her do what her body allows,” Brandi said. “If she can, she can. If not, she won’t.”

The Gauts work diligently to ensure Kambri has a support team wherever she goes. Before each school year, Brandi shares with the school nurse, a handbook about SCD that Cook Children’s and Dr. Johnson provide to patient families. The nurse, at Kambri’s new school in Cleburne, educated the coaches about Kambri’s condition and what the young athlete needed from them. The nurse explained triggers that signal SCD complications and the coaches even developed a plan, including non-verbal cues during games, when Kambri needs rest and more water.

Dr. Johnson says she prefers treating her SCD patients with Hydroxyurea, an oral medication that treats pain crises and a broader range of complications including anemia, which can be the main issue. Therefore, Dr. Johnson prefers her patients to try Hydroxyurea first and if it fails to control their pain crises, she sees Adakveo as an adjunct therapy.

“Some patients with SCD are not that anemic. This drug could be sufficient for them,” Dr. Johnson said. “We would prefer to have a [subcutaneous] form of the drug rather than infusion. We offered that feedback during the trial. The downside is researchers will not look into something like that when they have not completed the trial for infusion therapy.”

Clinical trials underway for younger patients

Currently, doctors at Cook Children’s are only treating about 20 patients with the new drug, out of the 400 patients in the SCD program and results are varied. Qualifying age and administration by infusion are limiting factors. Dr. Johnson says teenagers can have more of a say in their medication choices and some young adults like to try Adakveo even if they later decide the inconvenience factor is less attractive to them. Dr. Johnson believes the monthly infusions could be a drawback for younger children, but the clinical trial is ongoing to understand the effectiveness down to toddler age.

The new medication has provided relief to Kambri and her family. Besides the teen feeling well enough to compete in sports, we asked Kambri what else she enjoys.

“My favorite subject [in school] is science, learning about planets, chemistry, things like that,” she said. “I watch Netflix. I like being with friends and talking with friends on Facetime. Watching sports.”

“Even though this drug is not a panacea, it is great to have more in our medicine cabinet to treat sickle cell,” Dr. Johnson said. “This is more than a Band-Aid. Pain meds are a Band-Aid. This is a game-changer for us.” 

Learn more about sickle cell disease:

U.S. Centers for Disease Control and Prevention
Sickle Cell Disease Coalition
Sickle Cell Disease Association of America, Inc.

Aiden Snyder responded with determination and positivity when his leukemia came back again and again and again after his initial diagnosis at age 4.

With each relapse, Aiden’s doctors tried a new approach to combat the rogue cells overtaking his bone marrow. Aiden received chemotherapy as well as drugs specific to his type of cancer, along with two stem cell transplants over the years. Another strategy involved tweaking some of his healthy cells in a lab, and then returning the altered cells to his bloodstream to zero in on and kill the cancer.   

The good news? Aiden, now 11 years old, has been leukemia-free since his second transplant in December 2020 at Cook Children’s Medical Center. He still goes in for monthly checkups to keep watch on his blood counts. Doctors are also monitoring the hardened red patches of skin that resulted as a side effect of his last treatment. 

A fifth-grader, he’s back in school and considering a nursing career someday, thanks to the inspiration of nurses who lifted his spirits during his frequent and extended hospital stays. “I just want to help people in that way,” he said.  

In September as we observe Childhood Cancer Awareness Month, we salute Aiden and celebrate the evolving research that makes today’s medical options more promising than ever for pediatric oncology patients.  

“Forty years ago, the hope would've been that they would survive. Now it's the expectation,” said Kenneth Heym, M.D., medical director of the Cook Children’s oncology program. “Aiden is a perfect example of a patient who continued to have the deck stacked against him. But with new emerging treatments and a positive can-do attitude and that desire to move forward, not only is he still here, but he is a success in every sense of the word.”

Aiden’s long battle against an especially aggressive type of cancer – leukemia with a genetic mutation called Philadelphia chromosome-positive (Ph+) – shows his grit, humor and resilience. His providers at Cook Children’s describe a boy with the unusual maturity and smarts to weigh in on medical decisions over the course of his care. Here’s how it unfolded.  

Round 1: Chemo and Meds

In May 2016, Aiden Snyder was a pre-kindergartener living in San Angelo with his mom and dad, Erica and Chris, and little sister Ella. His parents noticed puzzling bruises and a rash; a blood test the next day found that Aiden’s platelet count was dangerously low and dropping fast.  He needed expert care right away, so Cook Children’s sent a plane to fly Aiden and his mom to Fort Worth.  

“He was in scary bad shape,” Erica remembers. The bruises had been an early sign that cancer blasts were multiplying in the marrow, or spongy middle of his bones, crowding out the cells that make platelets. Our bodies need platelets to clot blood and to stop bleeding. “His marrow was packed full of leukemia.”

Aiden’s more resistant Ph+ type of leukemia required intensive chemotherapy with close follow-up at Cook Children’s. Aiden and his mom moved into the nearby Ronald McDonald House for the next 10 months while he completed the first phase of his therapy. In addition to chemo, he received another medication, called a tyrosine kinase inhibitor, which specifically targeted the genetic mutation in his Ph+ leukemia.  

“By combining those medicines with leukemia treatment, we actually have taken the cure rates for Philadelphia positive so much higher,” Dr. Heym said. “By adding these newer medications to chemotherapy, patients are doing much better.”

Aiden lost his hair, got nauseous and struggled with appetite. But he also enjoyed trips to the zoo and the playground when he felt up to it.  “Our outlook from the get-go was, ‘You're not a cancer patient. You're a little boy who happens to have cancer right now,’” Erica said.  

When his intravenous treatments ended, Aiden returned to San Angelo. For the next year, he took three oral chemo pills daily. “That was supposed to seal the deal, just make sure it doesn't come back,” she said. Six months after the final oral chemo pill, Aiden’s leg started hurting.

Round 2: Transplant

The leg pain that Aiden experienced in October 2018 was worse than typical muscle cramps, and Tylenol didn’t relieve the pain. It seemed suspicious, so the Snyders drove to Cook Children’s, where tests confirmed that his cancer had returned. The initial intensive and targeted therapies had failed, and Aiden now needed a stem cell transplant.  

Cook Children’s transplant coordinator Stephanie Tettleton explained that the process starts with intense chemo or radiation to wipe out the patient’s bone marrow before introducing cells from a matched donor. For Aiden’s transplant in January 2019, the donor cells came from stored umbilical cord blood obtained through the national registry.

“Think of it like a garden where you're going to get all the weeds out, get it ready, and then you plant new seeds. The new seeds are that new marrow or the stem cells that grow a new immune system. That's a very basic way to view a stem cell transplant,” Tettleton said.

Cook Children’s performs about 50 stem cell transplants annually. Lindsay Barkley works with Tettleton on the donor end and on patient education. Barkley pointed out that Aiden spoke knowledgeably with his doctors about stopping or starting medications. A positive outlook helped him cope, too.  

“Even when Aiden was going through terrible things, he would come in with a smile on his face,” Barkley said. “It helps to have hope and have a good emotional outlook that you can get through this together.”

Families need to know that because of the child’s compromised immune system after a transplant, he or she must be isolated for a year to prevent infections. Aiden returned to San Angelo and was homeschooled until he was cleared to return to school in person in January 2020. Within just a few weeks, Aiden came down with a horrible headache.

Round 3: CAR T-Cell Therapy

Fast-growing cancer cells were back and had made their way to his spinal fluids, where they clogged the ventricles in his brain and caused the headache. Aiden was flown to Cook Children’s once again. With this relapse, due to the pressure in his brain, Aiden suffered seizures.

“We ended up in the ICU. He was in very bad shape,” Erica said. “I wasn't sure he was going to wake up. And I wasn't sure if he did wake up, if he would be the same kid. He was completely unresponsive. It was very scary.”

Now what? Chemotherapy, targeted medicine and a stem cell transplant hadn’t stopped the cancer, but there were newer options available. The next recourse was CAR T-cell therapy, or chimeric antigen receptor T-cell therapy, which had been approved by the Food and Drug Administration only three years earlier. CAR T-cell therapy adapts the patient’s own T-cell infection fighters to recognize a protein marker on the leukemia cells. The treatment takes about four weeks starting when the patient’s T-cells are removed, then reprogrammed, and then infused back into the bloodstream. 

“It's wild. It's like science fiction,” Erica said, describing the leukapheresis technique that filtered Aiden’s blood to pull out the white blood cells, which were then reengineered in a lab and returned to his body. Aiden underwent the procedure in June 2020 at another hospital (CAR T-cell therapy became available at Cook Children’s later that year). 

While the initial results were promising, within months Aiden’s aggressive Ph+ cells mutated to avoid detection from his T-cells. The cancer was no longer expressing the characteristic protein that Aiden’s T-cells could recognize. In September 2020, a routine blood test revealed a very small amount of cancer that soon began replicating faster than they had seen in the previous relapses. Nine-year-old Aiden was almost out of options.

Round 4: Transplant, Again

Chris and Erica gave their son the freedom to decide what to do next. Devastated and in counseling, he wanted straightforward information about every scenario:

• A second stem cell transplant, which was risky so soon after the first transplant
• A few out-of-state options that offered no guarantee of better outcomes than the procedures he’d already attempted
• Do nothing more, an acknowledgment of the heavy physical and emotional toll the leukemia and treatments had taken

Aiden chose to do a second transplant at Cook Children’s. One of the potential side effects of bone marrow transplant is an immune response where the donor cells recognize the patient’s body as foreign and attack, causing what is called graft versus host (GvH). GvH can affect the patient’s skin, eyes, gut or other body parts, On the plus side, these donor cells can also recognize leukemia calls as foreign, providing a long-term immune response to reduce the risk of relapse, called graft versus leukemia (GvL). In order to better harness the GvL effect, Aiden’s mom was selected because she was a haploidentical, or half-matched, donor.

Erica was admitted as a Cook Children’s patient in December 2020. White blood cells were collected from her through the same process that Aiden’s cells had been collected previously, and the cells were delivered to Aiden in the hospital room next door. As expected, the half-match transplant resulted in the GvH effect, a mixed blessing. GvH showed up in Aiden as a widespread skin rash along with hardening of the skin and joint contractures. Over time and with medication, the GvH is starting to fade.

“The benefit is that the protection from the graft versus leukemia effect should last forever,’ said Richard Howrey, M.D., associate medical director of the Cook Children’s stem cell transplant program and Aiden’s transplant doctor.

“It's unusual to see a patient with this many relapses doing as well as he has been doing,” Dr. Howrey said. “Thanks to new medications which treat GvH and other complications associated with transplants, we're making good progress. Kids who wouldn't have survived in the past are surviving now.”

When you ask Aiden about his hospital memories, he mentions highlights like playing jokes on the nurses; hanging out with the therapy dogs; supervising while Dr. Heym mended a toy giraffe; and talking with anyone about Legos, Harry Potter books and zones of the ocean. “I feel like a lot of it is hard to forget,” he said.

What advice would he give to another child diagnosed with leukemia? “If you get up moving and playing, you won’t think about it as much.”

Child Life specialist Erin Loftus has been one of Aiden’s favorite companions at Cook Children’s since his first clinic visit. When he comes in for checkups these days, they play video games together. Even at a young age Aiden stood out for his ability to voice opinions and observations that shaped his care, she said.

“He's always been really good about telling us what he needs, what he wants, what works, what doesn't work,” Loftus said. “He’s had a very rough road, but because he has been able to speak to the doctors, I think it's kind of helped bridge that gap. He’s not afraid to say he didn’t like how something was making him feel.”

Dr. Heym said the staff appreciated hearing Aiden’s articulate perspectives and insights on how the treatments impacted him.

“This is his body and these are his feelings and his side effects,” he said. “Nobody is going to tell you better what's going on with them than the patient themselves. Being able to get that feedback from the patient lets them feel like a bigger part of what's going on.”

The Snyder family, meanwhile, moved last year to Crowley so they’d be closer to Cook Children’s if another emergency arises. Aiden’s mom now works as a Cook Children’s parent experience specialist. To a mother or father who feels like a helpless bystander in a medical crisis, Erica makes the point that parents are the experts on their own child. “If something doesn't sit right, we want you to tell us that. We want you to ask questions. We want you to be part of the conversation.”

Future of Cancer Care

Cook Children’s is among the research sites where clinical trials are leading to state-of-the-art breakthroughs in cancer treatments. Dr. Heym is excited about advances that hone in on specific characteristics of the disease – to eradicate the cancer, while causing minimal harm to the rest of the body. Medication and CAR T-cell therapy, for instance, are increasingly designed to target just the leukemia abnormalities.

“We have so much more at our disposal now than we did in the past,” he said. “It's ushered in this whole new revolution in oncology treatment where we're trying to get away from the shotgun approach of conventional chemotherapy and go more with the sniper rifle of these targeted therapies.”

Dr. Heym says Cook Children’s incorporates the new advances into a multidisciplinary, comprehensive approach to fighting childhood cancer.  

“We’ve built the kind of foundation here that allows us to provide every patient with the best chance of survival. And that's our goal. Even when we can't cure, we still want to care as much as possible.”

Due to inflation, families across the country are facing higher costs for gas, energy, housing, groceries and other goods.

Teams and leaders who work across Cook Children’s Health Care System have seen the extra stress this has caused patient families. Cook Children’s has resources to assist parents and caregivers through these challenging economic times.

“Needing help is really common, especially due to the pandemic,” said Anu Partap, M.D., M.P.H., Physician Director of Health Equity at Cook Children's. “Lots of families needed extra help or support so that their children would be OK. Reaching out for help can last a lifetime.”

Between one-third to half of all parents in Texas have needed help with food, housing, or their own mental health over the last few years, Partap said.

The Center for Children’s Health, led by Cook Children’s, conducts a Community Health Needs Assessment to guide community programs and collaborations. The 2021 assessment includes surveys of parents, caregivers and community leaders in our service region of Denton, Hood, Johnson, Parker, Tarrant, Wise, Collin and Grayson counties. The assessment also includes focus groups, interviews and secondary research.

The most recent assessment, fully completed in April 2022, showed that food security, mental health care, preventive care, dental care and transportation were some of the major obstacles for many parents and caregivers.

“Parents and community leaders shared that much of that was from COVID-19 and now the ripple effect is inflation, which we’re all experiencing,” said Becki Hale, Assistant Vice President of The Center for Children’s Health, led by Cook Children’s. “Families have been struggling so much for so long because of COVID-19. Jobs were impacted and we had all of these issues. Now here’s the aftermath of all of that. It’s another wave of struggle. It’s definitely concerning.” 

In 2021, many children went without necessary care, including medical, dental or mental health care, according to the parent assessment.

“Affordable housing, food insecurity – these may impact a child’s ability to learn and ability to receive the health care they might need,” Hale said. 

Providing Programs and Community Outreach

The Center for Children’s Health has many programs and resources for community health outreach to children and families in our service area, including programs for oral health, injury prevention, asthma, mental health and adverse childhood experiences. 

The Build-a-Bridge program at the Center for Children’s Health aims to help communities in Fort Worth overcome barriers to health care. Build-a-Bridge community health workers said they have reached out to parents who are struggling as inflation ramps up the cost of living, especially for groceries. 

“So many people don’t have as much as they used to,” said Community Health Worker Clerbela Valcourt.

Dora Garcia, Program Coordinator for Child Wellness, commended local food pantries for continuing to serve people in need, especially as costs have risen.

“I think people are just spent from the pandemic, and they don’t even have a chance to catch their breath,” Garcia said. “We’re already starting at a negative due to the pandemic and the needs to be addressed. Inflation is keeping us where we’re at. We’re stuck, yet our community partners continue to be there for families as best they can.”

According to the 2021 assessment, 55,750 local children were living in households that “sometimes” or “often” could not afford enough to eat.

“Food insecurity was an issue before, but COVID exacerbated that,” Hale said. “Now with the rising cost of food, I think that will continue to be a major concern.”

Resources for parents and caregivers are available at 211 Texas; Tarrant Cares and TXT 4 Tarrant Cares. TXT 4 Tarrant Cares is a community texting service that makes it easier for local families to find the help they desperately need, close to home. Text the word FIND to 67629 to access a list of nearby organizations to contact and ZIP code-specific resources.

Rising gas prices have made it harder for families to take essential trips, whether it’s getting resources or taking children to an appointment.

“Diapers are expensive even when they’re not at an inflated cost, but then you add another cost of transportation to go to a diaper bank and then you have another barrier for access to basic needs,” said Dawn Hood-Patterson, Ph.D., program manager of Community Health and Adverse Childhood Experiences at the Center for Children’s Health.

Cook Children’s Case Management Social Work team provides resources for families on the inpatient floors, emergency department, on-campus Specialty Clinics, and Specialty Programs. Some resources may include access to meal assistance, transportation assistance and lodging assistance. Social workers have continued to see how rising inflation has impacted families of all income levels and they have adjusted some of their resource support to offset the additional financial stress families may experience.

Any family of a Cook Children’s patient is eligible for resources and assistance from a social worker.

“The nation is being impacted which may also affect some of our patients and families more than others,” said Karaya James, Social Work Manager at Cook Children’s. “It is OK to ask for help and our team is ready to have these important conversations with our Cook Children’s families. If we cannot meet the need with our resource support at Cook Children’s, we work to find a solution in the community to better meet the family’s needs.”

This year, James says she has noticed an increase in requests for Cook Children’s medication assistance program and travel assistance, including lodging and gas assistance.

Children with special health care needs or complex needs can be affected if a family is struggling financially. It could be harder for the parent to fulfill their needs, such as driving to appointments or providing a copay.

Supporting Parents and Caregivers

Dr. Partap says it’s important that families are open with their health care providers about how they are managing.

“When we hear that it’s going to be really hard for a family to participate in therapy or medication because of cost or distance or time, we can suggest or look for lower cost or sometimes free options,” Dr. Partap said. “It’s not easy at first, but it’s important for your child’s health.”

The 2021 assessment data show that most parents said that they are experiencing more stressors and are having a harder time coping.

According to the assessment, 57% of children ages 3-5 have a caregiver who would say they are coping “very well” with daily parenting demands, which is lower than the national percentage of 63%. The local rate in the eight-county service area is also lower compared to Texas benchmarks before and during the pandemic.

The assessment also showed that fewer parents have a source of emotional support. One out of seven children in the region has a caregiver who does not have a source of emotional support to help with parenting, an estimate of 171,000 children, according to the assessment.

Common sources of emotional support are other family members, close friends, spouses or domestic partners, places of worship, religious leader, health care provider or a support group.

“When hardships extend into basic needs, like we’re going to lose our home, or we’re not going to have as much to eat, families often feel embarrassed or shy or reluctant to reach out for help,” Dr. Partap said. “Asking for help is brave, strong and loving because then we’re in a position to listen for the sake of our patients.”

Dr. Partap says that during economic hardship, it’s important that parents and caregivers prioritize providing emotional support to their children.

“When things are tough, all kids really want to feel is that they’re connected with their families, they’re loved, they’re safe, they’re valued,” Dr. Partap said. “That is something we can do no matter what our financial situation is. It’s hard, but we have to remember to pause, breathe and then bring that sense of security to our children, even when we are feeling more stressed.”

One of the most important things a parent can do is to find help from friends, family, professionals and faith or church support, Dr. Partap said.

“No matter what the hardship is, it comes back to how do we as parents, families and the community create a buffer or layer of protection around children, no matter what is happening,” Dr. Partap said.  

Go here to view community resources from The Center for Children's Health, led by Cook Children's. 

Thursday, Aug. 4 is National Chocolate Chip Cookie Day. You may know that cookies are celebrated at Cook Children's year-round. 

Each Wednesday from 3 p.m. to 5 p.m. freshly baked, warm cookies are available in Camelot Court for $1 each. Dozens of patients, families and staff members stop by every Wednesday and make this a delicious tradition. Flavor choices usually include oatmeal, M&M, snickerdoodle, double chocolate, and, of course, chocolate chip.

It’s important that families feel confident and empowered when they come away from a Cook Children’s visit with written information that clearly and specifically addresses their health concerns.

Cook Children’s strives to consistently provide take-home educational resources at each visit across the system, from the primary care and specialty clinics to urgent care and the medical center. Materials are regularly updated with the latest knowledge and research and vetted for accuracy. And they utilize friendly formatting to emphasize key points in plain language -- no medical jargon, in other words.

Megan Chavez, VP of Patient and Family Experience at Cook Children’s, calls these resources an investment in care that reduces inequities, provides a reference for what was discussed in person, and ultimately improves the health and well-being of the child and family. Reliable and pertinent education from their doctor allows families to feel better equipped. They can refer back to it later if questions come up.

“We want patients and families to be active in their care,” Chavez said. “And to do that, they need the education and information that our care teams have. It helps them be arm-in-arm with us as we work together to understand what is best for their child.”

Patient families routinely tell Cook Children’s that they consider the education materials a vital component of their experience. Whether a child is receiving a complex diagnosis, a new treatment, or a routine checkup with the pediatrician, this education helps to ensure care continues into the home. Written guidance provides insights and instructions that can help prevent complications from occurring.

What’s the source? Licensed content comes from companies that specialize in patient education and that continually update the information. Additionally, more than 950 custom handouts created by the experts at Cook Children’s are reviewed every three years, or sooner if needed. That systematic approach helps to ensure the materials are fresh and verified. The Patient Education and Health Literacy Council at Cook Children’s works behind the scenes to maintain high standards. 

Topics include information about diagnosis and treatment, safe use of medications, pain management, diet modifications, rehabilitation, symptoms of worsening condition, and much more. For instance: A variety of handouts about migraines address how to manage chronic headaches, lifestyle reminders, sleep habits, occipital nerve block and other content. Handouts about asthma address such topics as asthma triggers, inhaler use and a diagram of child lungs -- available in Spanish, Arabic, Chinese, Swahili and multiple other languages.

Appearance matters too. The materials are colorful, illustrated and arranged with frequent bullet points, bold type and subheadings that create an attractive page design. Some include checklists or blank lines for the patient caregiver to write notes. 

“One of the things we hear from our patient families a lot is, ‘What do I need to do when I get home?’ We want to make sure we provide our families with consistent, understandable information to help them take care of their child. It’s so important,” Chavez said.

She cited these benefits of routine distribution of education materials:

• Families can detect infection or other concerns earlier, and head off any issues before they worsen. Trips to the Urgent Care and Emergency Department are reduced.
• When families receive accurate and updated resources that they can count on from Cook Children’s, they are less likely to need to search for answers online from sources that might be inaccurate or outdated. 
• For patient families who don’t speak English fluently, the written handouts support the conversations they have with their doctors. Many of the educational resources at Cook Children’s are available in Spanish or other languages. 

The resources at Cook Children’s also are mindful of health literacy, which is defined as a person’s ability to understand and use statistics and other information in decisions regarding health care. Health literacy goes beyond the ability to read; it involves interpreting medical facts, evaluating risks, and knowing how to take action. Stress, distractions, pain and sleep deprivation play a role in how well we can understand information. 

American Academy of Family Physicians (AAFP) recommends using simple words, short sentences and visual aids to improve health literacy. Written materials increase patient satisfaction and knowledge compared to verbal instructions alone, the AAFP points out. The organization reports that more than one-third of U.S. adults have limitations in health literacy, such as following directions on a prescription drug label. 

“Probably most people who have a sixth-grade education can read a prescription label, but because of limited health literacy, they may not be able to take action and comprehend the next steps of what to do with it,” said Suzanne Beckett, director of Library Services at Cook Children’s. 

In addition to the printed handouts, online fact sheets at Health Resources (cookchildrens.org) cover topics as varied as childbirth and newborn care to puberty and teen mental health. The online Health Resources also includes access to a drug database, episodes of the Doc Talk podcast, and a link to request information from a Cook Children’s librarian. 

As a bonus, the new MyCookChildren's app includes a feature that allows families to reach out to the Family Health Library for additional reliable information.

Chavez encourages the families of patients to request reference materials at their appointments to ensure they know what to expect, the next steps and anything they should be monitoring at home. She described the handouts as a tool to build knowledge, confidence and relationships between patients and health care providers.

“It also ensures that we're able to attain our Promise, which is improving the health and well-being of our kiddos,” she said. “It's in our DNA to make sure that our families are part of our care team. This is one of the ways we do it. Connecting those dots and making those investments help us do the things that we all value.”

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The professional librarians at the Matusik Family Health Library are here to help. The library, located on the first floor of the medical center, serves all Cook Children’s patient families. Ask for a health information packet prepared just for you or contact a librarian here: Family Health Library (cookchildrens.org)

Attention-deficit/hyperactivity disorder (ADHD) made school a struggle for 17-year-old Moses Hernandez as far back as kindergarten.

“Basically I was all over the place. I would talk a lot, always. I couldn’t stay focused on one thing,” he remembered. “It was hard for me to listen to the teachers.” At home, he caused trouble.  

Moses came to the Cook Children’s Child Study Center in 2009 for an evaluation that diagnosed him with ADHD and disruptive behavior disorder. Through medication and therapies -- targeting his anger and impulsiveness – Moses’ symptoms diminished while his self-discipline and academic success took off.

He’ll graduate in June from Fort Worth’s Benbrook Middle-High School, where he took rigorous courses such as Advanced Placement calculus, economics and engineering. He played football and wrestled, worked part-time, and won full-ride scholarships to study mechanical engineering at Texas Christian University.

Moses gives credit to the medication and care he received at Cook Children’s to overcome the distractions and behavior problems when he was younger. ADHD is a chronic condition that can’t be cured but managed. This article explains the complex challenges and the treatments that can help patients like Moses and their families.

Focus and Self-Control

In elementary school, Moses and his brother lived with their grandfather. Their grandfather tried to read with Moses and go over the homework. But Moses wasn’t interested in school, and his grades showed it.   

“I was like, ‘I am not doing this work. Why do I have to study?’ I would fail every word test,” he said.

Staff at the Child Study Center began working with Moses to rein in his ADHD and disruptive behavior. The first medications prescribed made him prone to crying and staring at the wall, he said. At a reduced dosage, he felt better.    

Meanwhile, the death of his grandfather created more difficulties. A cousin, Jenean McDowell, became the boys’ guardian in 2014. Jenean recalls Moses arguing about chores, rebelling, picking on his brother, and even climbing on the roof. “He was a rough piece of work,” she said.

Moses was additionally diagnosed with adjustment disorder, defined as an unhealthy or excessive reaction to a stressful event or life change. He also suffered from mixed anxiety and depressed mood. Therapists at the Child Study Center coached Moses on coping skills and techniques to calm himself down. Jenean noticed greater motivation, organization and cooperation after about one year.

“He didn’t talk back anymore. He didn’t sneak around and tear things up. He decided he liked straight As,” she said. “He’s like a totally different kid.”

Moses explained that the medications he takes allow him to focus on tasks. He describes himself as more in control of his emotions, less likely to “do something that’s really dumb” on a whim. During the COVID-19 lockdown in 2020, he temporarily quit taking his medication as an experiment. But without the meds, he said, he couldn’t sit still or stop himself from aggravating his brother.

Therapy sessions over the years at the Child Study Center taught him to think through his options before acting impulsively. He learned breathing techniques to manage his anger. Although he didn’t initially want the treatment, and the medication caused some side effects early on, now he encourages others with ADHD to consider the meds as a tool.    

Moses remains energetic and – as he puts it -- goofy and excitable. He’s also confident in the classroom, a leader on the wrestling mat, and a hard worker who aspires to start his own business by the time he’s 30. He’s grateful for Jenean’s love and the Child Study Center’s expertise.

Becky Neander, MSN, APRN, CPNP-PC, joined Moses’ care team in 2017, providing resources and medication oversight. She sees him as an example of tenacity and hope for those who deal with ADHD and behavior disorders.

“I could not be more proud of Moses,” Neander said. “He has achieved so much already, and I look forward to hearing about all of his successes as a TCU Horned Frog!”

Moses takes Concerta (a stimulant) and Intuiv (a nonstimulant that requires careful monitoring for a potential drop in blood pressure) once a day. Checkups at the Child Study Center every three months have helped keep Moses’ medications at the right level, and his behavior in check, Jenean said. “It really 100% worked. That is what saved us.” She offered this advice to caregivers and parents: “Don’t give up.”

Understanding ADHD

The Diagnostic and Statistical Manual of Mental Disorders -5^th edition lists several criteria for diagnosing ADHD in children and adolescents, including these signs:

• Inattention: Seeming to not listen; careless mistakes; frequently losing things; getting sidetracked; forgetfulness  
• Hyperactivity and impulsivity: Fidgeting; difficulty staying seated; running and climbing at inappropriate times; interrupting and blurting out; difficulty waiting their turn
• Multiple symptoms have been present for at least six months; symptoms are inappropriate for the child’s development level; symptoms interfere with school, friendships or work activities.

Treatment plans for teens and children ages 6 and up often take a combined approach of medications, behavior management and behavioral classroom interventions. For preschool-aged children, behavior therapy is recommended as the first line of ADHD treatment.

Up to 80% of children with ADHD report improvement when taking stimulants, the most widely used ADHD medications, according to the U.S. Centers for Disease Control. Because stimulants can affect appetite, sleep and weight, patients must be closely monitored so that adjustments can be made if needed. 

Neander said scientific studies have shown differences in the neurotransmitters, which are the chemicals that transmit signals between nerve cells, as well as in brain structure and operation in children with ADHD. The executive function works like the brain’s manager, she said. Impairment to executive function can cause the inattention and/or hyperactivity typically associated with ADHD, as well as other issues. 

“Executive functions help people organize, regulate attention, make decisions, problem-solve, keep information in immediate memory, manage time, control emotions and motivation and control impulses,” Neander pointed out. Possible concurrent symptoms along with ADHD can include aggressive behaviors, anxiety, low self-esteem and learning disabilities.

An estimated 5% of children worldwide are diagnosed with ADHD. Parents with concerns should talk to their child’s pediatrician. Diagnosis can be made by a primary care provider or mental health professional. 

Services at the Child Study Center

The Child Study Center at Cook Children’s is a comprehensive hub for diagnosing and managing a wide range of developmental disorders including ADHD, Autism Spectrum Disorder and intellectual disabilities

“We start by educating the caregivers on the child’s particular symptoms or difficulties, so they have a better understanding of the cause of each child’s behavior,” Neander said. “We then manage the medications that help with impulsivity or other behaviors.  We can provide therapy/counseling through our psychology department or with outside referrals.  We also can work with the school on behavior plans/interventions.”

Neander saluted Moses’ grandparents and cousin for supporting him along the way. Parents, grandparents and guardians are the strongest advocates for their children, she said. 

“It is vital that caregivers educate themselves on their child’s diagnosis, what to expect, and how they can help at home or through the school. We provide resources, but families must take an active role in their child’s management,” she said. “We must work as a team for the child to be successful in school, with friendships, and eventually as independent adults with the tools they are given.” 

PGA golfers Austin Smotherman and Stephan Jaeger were here to bring smiles to patients.

Cook Children’s staff divided up into four teams to decorate and set up the holes – each with a different theme.

All holes have a bedpan at the end – that’s why it’s called the Bed Pan Open.

The themes were “Holey Guacamole,” “Brave Pups” (our Sit Stay PLAY! facility dogs), “Board Game Mashup” and one was baseball-themed.

National Volunteer Week (April 17-23) recognizes the contributions that volunteers make every day across the country and encourages others to discover their path to making a difference.

Cook Children’s Health Care System currently has 759 active volunteers. Half of our volunteers are virtual and work in the Stitch-A-Wish program, Family Advisory Councils, Lend-a-Hand projects, as well as off-site locations, such as camps.

Each one of our volunteers is an important part of the patient experience at Cook Children's. Through their gifts of time, talent, and compassion, volunteers help sick and injured children and their families have the best experience possible under their circumstances.

Directing and escorting visitors, reading books, playing in the playrooms, comforting little ones, educating parents about infant safety, and helping customers in the gift shop are just a few ways our volunteers make a challenging time better, put a smile on a child's face, or support an anxious parent.

Cook Children’s lost several hundred volunteers during the two years that COVID took its toll. Now, community members are vaccinated and feel more confident about getting out and volunteering. Most of our experienced volunteers have returned to active duty and many new volunteers have joined us since we re-opened our program. It’s been wonderful to begin rebuilding and heading toward “normal” a step at a time.

Cook Children’s has 250 adult and college students who are actively volunteering at Cook Children’s Medical Center, urgent cares, and clinics. They volunteer in direct Patient Care placements at a child’s bedside, in playrooms, and in surgery recovery, or in Helping Hands placements like the gift shop, children’s library, hospitality cart, wayfinding, and more.

The junior volunteer program will re-open in June after a two-summer hiatus due to COVID. Volunteer Services will host 50 high school students, ages 15-18.

To learn more or to apply, please visit: Adult Volunteers (cookchildrens.org) or contact Marie Howell, Manager, Volunteer Services at marie.howell@cookchildrens.org.

Let us introduce you to a few of the volunteers here at Cook Children’s.

Name: Julie Landry

Lives in: Arlington

Years volunteering at CCHCS: 7 years

Landry has volunteered at Cook Children’s Health Care System for seven years, a majority of which has been in the surgery center.

What do you enjoy about volunteering?

“I like it because I’m with the parents to reassure them. As a parent myself, you know what they’re going through,” Landry said. “I really enjoyed being a parent and helping out. It’s a really great group of people."

What do you share with others about volunteering?

“You really feel like you’re doing something and I feel like I’m helping people, I really do,” Landry said. “When families say ‘thank you for being here’ when you leave, it makes you feel good. You’ve relaxed them.”

“We don’t get personal because we can’t, but some people will share everything with you. You’re there to sit with them and empathize with them.”

Name: Lawrence Hogue

Lives in: Arlington

Years volunteering at CCHCS: 10 years

Lawrence has volunteered at Cook Children’s for 10 years. On Mondays and Wednesdays, he visits patient rooms to talk to kids, and offer parents and caregivers a break.

“I just can’t tell you how much I love this place, it’s a part of me now,” Hogue said. “I’ve called it my ministry. This is what I like to do. Cook is my place - this is my place right here.”

Hogue volunteers every Friday at the NICU where they call him “the baby whisperer” because he sings and rocks the babies to sleep.

“Everybody is so friendly – the doctors, the nurses, the support team,” Hogue said. “I feel like I’m part of the team. If I can make the kids smile a little bit, and some of them will talk your ear off. Sometimes they have no filter and I just love them. The 3-year-olds, the 4-year-olds and even some teenagers, we talk about what they want to be when they grow up.”

He knows it can be scary for kids to go to the hospital, so he hopes to make them feel better.

“It makes me feel good when I can make a child smile at me,” Hogue said. “If I can relieve any of the pain by being around, telling them little jokes or nursery rhymes and get them to laugh a little bit – it really detracts from their fear. It really makes me feel good and warms my heart.”

Name: Courtney Busby

Lives in: Fort Worth

Years volunteering at CCHCS: 2 years

Busby works full-time at a pharmacy and takes grad classes online, but she still makes time to volunteer at Cook Children’s. She also enjoys the flexibility with volunteering. She works in the morning, volunteers at Cook and returns to work in the afternoon.

When she was little, she remembers visiting Cook Children’s often for her brother. She said she felt taken care of by the staff as a patient sibling.

“I’ve always loved kids and have a passion for kids,” Busby said. “My biggest thing that I love doing is giving parents a break because sometimes they don’t want to leave their kids by themselves. So even just me staying in there so they can relax and go grab some chips or some food.”

She says she doesn’t mind changing diapers or helping feed kids. Patients’ faces light up when she brings them toys from the playrooms.

“The mom is just as lit up because she’s happy that her child has some kind of joy while they’re in the hospital,” Busby said. “My favorite part is seeing their faces light up when I get to help them.”

You decide to seek out some information online and you find this:

“Although data to make specific recommendations as to when it is safe for infants to sleep in the prone or side position are lacking, studies that have established prone and side sleeping as risk factors for SIDS include infants up to 1 year of age. Therefore, infants should continue to be placed supine until 1 year of age. Once an infant can roll from supine to prone and from prone to supine, the infant can be allowed to remain in the sleep position that he or she assumes.”

AAP SIDS and Safe Sleep Guidelines

“Heh?”

Hopefully none of us really talk this way, but I have a feeling sometimes it’s close. Doctors have a notoriously bad rap for their handwriting; fortunately, we’ve mostly fixed that with electronic records. Unfortunately, some of us aren’t known for our amazing verbal communication skills, either.

A study released in Pediatrics this week highlighted this fact. The authors surveyed mothers of 4-6 months old babies about the education they received from their doctor when their baby was a newborn.

They asked the mom if they received advice on the following topics: vaccination, breastfeeding, sleep position, sleep location and pacifier use.

All of these seem like pretty basic newborn information. Most doctors would want to cover them during that time frame. They all are included in very specific guidelines with clear instructions for how the American Academy of Pediatrics wants us to educate our patients?

How did the doctors do? The following percentages reflect the number of mother’s who reported receiving correct advice for the respective topics:

1. Does it seem like we’re speaking in a foreign language?

For many cases, the study showed that either the doctors failed to mention some pretty important topics or they weren’t presented in a way that parents understood or remembered.

One of the reasons I love to write is that it forces me to have clear thoughts about the medical issues I deal with every day and to focus on clear strategies for communicating those thoughts to patients. Of course, I’m not perfect. Here are some of the communication mistakes I (and from the results of this study, other doctors) make and some strategies for the way things should go (with help from you of course):

Some people describe the first few years of medical school as being more or less a foreign language study. During those years, medical students learn terms that most people don’t need to know. We use them as a way to communicate with other doctors as we begin to learn from “real” patients in the later years. The problem is we sometimes forget that we can’t talk that way all the time if we want to be understood by our families.

How can you help us while we work to get better?

Don’t be afraid to ask questions or to stop us if you don’t understand. Your child’s health is important to us. We know that you have to understand our instructions if we want to have any chance to help your child stay healthy or get better when they are sick. Ask us to slow down or to re-explain a certain concept again if what we say doesn’t make sense.

2. Have we given you the best opportunity to hear us?

This newborn study is a perfect example of this. A newborn mom is tired and stressed and getting health advice from the nurse, the doctor, their family and the Internet, so what usually ends up happening? We rush right through with the messages that are important to us and hope that mom gets them in 5 minutes.

Thanks for coming in. Good luck, mom!

Other examples are when we deliver bad news or just simply have a baby with an ear infection that is screaming in pain while we get louder and louder to make sure we are “heard.”

How can you help us while we work to get better?

Some are easier than others. When we’ve delivered bad news, there’s probably nothing either of us can do to help in that situation. But we should definitely slow down and wait a minute to let you think before we plow through into “next steps.”

If your baby is fussy and you can’t concentrate, feel free to ask if a nurse could come help for a second while we talk. Even if the baby stays in the room, just having them out of your arms makes it easier to listen. During those newborn visits when you are sleep deprived, ask for resources that you can take home and read when your mind is a little more clear (if that every actually happens for any of us with newborns).

3. We try to cover everything, but did we focus on what you want to learn?

This has another medical school analogy. Some people refer to the first few years of medical school as “trying to drink from a firehose.” There is so much information coming so quickly, you have to learn how to decide what is important enough to waste brain space on and what can be discarded (or “Googled”) later. So, when it comes to giving advice, we assume that you can do the same. The other assumption we make is that you actually care about the things that are important to us.

How can you help us while we work to get better?

First and foremost, please bring a list of questions. This helps us to focus on the things that are important to you, which are the things that you are going to remember anyway. As I get to know my “listers” better, I tend to grab (nicely) the list out of their hands and start writing the answers down (in ugly doctor scrawl) as we go along.

This is another time when asking for resources can be really helpful. Ask us to highlight or point out sections that are related to what you have talked about in the visit. Now, for this strategy to work, the resources have to come out of the diaper bag before they get formula and other baby fluids spilled on them - better yet, maybe they can just be pulled up on your phone …

I work hard to avoid these mistakes. But as I said, I’m not perfect. Communication is vital between a pediatrician and a parent. In the medical community, it looks like we have a lot of work to do.

Fortunately, we have some great examples at Cook Children’s to learn from.

But we can all get better with your help and feedback.