Teens with severe obesity are losing weight, making healthier food choices and gaining self-confidence thanks to the Cook Children’s Adolescent Bariatric Surgery Program.

Since seeing the first patients in April 2024, the bariatric program in its debut year treated 158 teens who struggle with the complex and chronic disease of obesity.

The program – located at Cook Children’s Pediatric Specialties Prosper -- is designed as a series of appointments for evaluation, education, nutrition counseling and other services. In consultation with their parents and the medical team, patients may choose to undergo gastric sleeve surgery six months into the program.

It’s an evidence-based approach in a clinical setting that applies expertise and sensitivity to the physical and emotional challenges of obesity. 

“Families feel an immense sense of relief during their visits with us,” said pediatric surgeon Kanika Bowen-Jallow, M.D., the program’s medical director. “They deeply appreciate being in a safe, supportive environment where they can openly discuss their child’s weight loss journey and explore options without fear, judgment or shame.”

In the year since its launch, the program enrolled patients whose average age was 15-16 years old. Their average weight was 293 pounds, with an average initial BMI of 46.6. 

Board-certified obesity medicine director Lily Han, M.D. provides medical management of obesity and any comorbidities. Comorbidities are conditions that commonly occur together with obesity, such as diabetes, heart disease, high blood pressure, polycystic ovary syndrome, depression and sleep apnea.

Getting specialized care for obesity can help those teens cut back on or eliminate the medications they’ve been taking for related conditions. 

“It’s changing their future while improving both their physical and mental health,” Dr. Han said.

The program hit a milestone on Nov. 18, 2024, when the first gastric sleeve procedure at Cook Children’s was performed. Dr. Bowen-Jallow removed about 70 percent of the patient’s stomach through tiny incisions. At her three-month checkup after surgery, the patient had lost 50 pounds.  

To celebrate the program’s first anniversary, we wanted to share its key points and successes. Here’s an overview.  

Getting Started

Cook Children’s Adolescent Bariatric Program offers customized support and resources for patients ages 13-18. Participants should be referred by their primary care provider or physician from a specialty such as endocrinology or adolescent gynecology. They can access the referral form online.

In order to qualify, candidates must have:

• BMI of 40 or higher, or
• BMI of 35 or higher, along with a comorbidity

The program follows obesity treatment guidelines from the American Academy of Pediatrics. Each monthly appointment provides one hour of intensive health behavior and lifestyle therapy. Family partnership plays an important role in all aspects of treatment. 

It’s common for patients to feel timid at first. But they gradually open up. Dr. Bowen-Jallow says the teens in bariatric care often tell her they want to lose weight so that they can ride rollercoasters and find fashionable clothes that fit.

“Many of them dreaded doctor’s appointments and have faced severe bullying from peers at school,” Dr. Bowen-Jallow said. “Here, they find a welcoming space where they can ask questions, feel supported and learn how to build healthier habits.”

Participants meet each month with a dietitian who teaches strategies for moderate portion size and healthy snacking. They’re asked to keep a food journal to track what they’re eating. They set goals for exercise.

Dr. Han helps patients reduce their adipose tissue, also called body fat, while maintaining muscle mass. She can run genetic tests or prescribe medications for weight loss as needed. Patients who take medication are closely monitored for side effects.

Obesity affects an estimated 14.4 million children and teens in the United States. It’s caused by genetics and other factors. The program at Cook Children’s gives hope and results.

“The community-wide response and enthusiasm from near and far has been amazing,” Dr. Han said. “I didn’t realize the reach our program would have with patients driving up to five hours for a visit.”

Gastric Sleeve Surgery

Not everyone in the program chooses to do bariatric surgery, but it’s an option. Dr. Bowen-Jallow performed gastric sleeve surgery on 15 teens in the program’s first year. It’s a laparoscopic procedure, meaning Dr. Bowen-Jallow uses a camera inside the abdomen. Patients typically go home from the hospital the next day.

“It’s an incredibly safe operation, and our entire goal is to have patients live the healthy, long life that they deserve,” said Dr. Bowen-Jallow, chair of the American Pediatric Surgical Association committee on Metabolic and Bariatric Surgery.  

Bariatric surgery takes place at Cook Children’s Medical Center -- Prosper. Dr. Bowen-Jallow makes five incisions ranging from 5-12 millimeters in length; then she vertically staples the stomach into two sections. The larger section of the stomach comes out through an incision opening. The process takes about an hour and a half.

Recovery and Follow-up

Nausea is typically the biggest challenge just after surgery. Solid foods are phased in slowly to avoid bloating or discomfort.

“The main thing we stress after surgery is hydration,” Dr. Bowen-Jallow said. “We teach them to always drink before they eat. We stress water. We have a whole script we follow to make sure that they’re meeting their hydration and protein goals.”

Dr. Bowen-Jallow said patients should expect some discomfort initially. But they can return to school within a week. No heavy backpacks at first, due to lifting restrictions. 

Following surgery, patients return to the clinic for checkups after two weeks, four weeks, three months, six months and each year for four years. They will continue to have access to the dietitian and all the program’s resources.

Patients can expect to see a 30% reduction in BMI over the first year after surgery. Weight comes off because of a smaller stomach capacity and less of the hormones that cause hunger cues.

It’s rewarding, Dr. Bowen-Jallow said, to watch the patients’ transformation.

“Their self-confidence soars, they feel healthier, and many experience a significant reduction in their medications,” she reported. “Their health and long-term outlook are completely renewed.”

Heading into its second year, the Cook Children’s bariatric program anticipates greater demand for services and a fuller slate of scheduled surgeries. 

“Growth at our current location is accelerating, and I do not see it slowing down any time soon,” Dr. Bowen-Jallow said.

It was May 7, 2024 when Natalie and Carlos Bendana Sr. learned their son, Carlos, had leukemia. He was just 3 years old and had been feeling sick off and on for a few months.

Leukemia Diagnosis

With navigating Carlos’ regular treatment, caring for two other children and working full-time jobs, Natalie and Carlos Sr.’s lives were turned upside down.

“It’s been an emotional rollercoaster,” Natalie said.

Their local family support system had also tragically passed away just two months before Carlos’ diagnosis with pre-B Acute Lymphoblastic Leukemia or pre-B ALL.

Leukemia is the most common type of childhood cancer and can be a result of genetic risk factors although the exact cause is often unknown. In acute lymphoblastic leukemia (ALL), the leukemia usually starts from the lymphoid cells in the bone marrow.

Leukemia Care with Cook Children’s

Carlos has received leukemia care with Cook Children’s Prosper from the start. Soon after Natalie had taken him back to the hospital for more testing, Lauren Akers, D.O., hematologist at Cook Children’s Hematology and Oncology Prosper, told her that Carlos had leukemia.

“The directness and honesty from Dr. Akers helped me prepare,” Natalie said. “I felt a mix of emotions the day she diagnosed Carlitos with leukemia.”

Natalie felt like she could process it better when Dr. Akers determined that it was type B leukemia.

“Pre-B ALL is a curable form of leukemia,” Dr. Akers said. “There are ups and downs throughout treatment. Our goal is to support kids and ensure they stay as healthy as possible through treatment. Carlos has a very good chance of being cured.”

When Dr. Akers explained how the first 10 months would be the hardest, Natalie and Carlos Sr. were so grateful for Carlos’ care with Cook Children’s. He had surgery, a blood transfusion and started chemotherapy right away.

“All the hospital staff have been amazing! Everyone even knows Carlitos’ name,” Natalie said. “He has four nurses and they laugh together and walk around with him. They always go above and beyond to make him feel comfortable and that he’s able to trust them.”

Carlos is being treated close to home at the Cook Children’s Infusion Center in Prosper. The specialist team does everything they can to make it comfortable for kids.

“They even call the infusion center the playroom!” Dr. Akers said. "Carlos is a sweet little boy and has become much more talkative.”

Carlos turned 4 years old in February and will have to go through treatment for 2.5 years, currently scheduled to end on Sept. 2, 2026. Natalie feels hopeful, but scared with still having a long way to go.

“Luckily, we caught Carlitos’ stage of leukemia at a time where he didn't need a bone marrow transplant and it’s not hereditary,” Natalie said. “We hold onto hope knowing that treatment and medication can help decrease chances of any form of leukemia returning.”

Enduring Challenges

Natalie and her family do everything they can to keep Carlos from getting a fever so they don’t have to bring him to the hospital. Like millions of people sheltered during the COVID-19 pandemic, they’ve had to keep Carlos living in lockdown.

Carlos is currently in a stage of being at a higher risk for infection and if he has a fever and his white blood cell count is low then he would need to be admitted. Once Carlos gets into the treatment level known as “maintenance” it will be easier. 

“The most important thing is to just treat them like normal kids,” Dr. Akers said. “It’s a long road, but our goal is to provide care throughout treatment and encourage the parent to treat their child like normal as much as possible.”

Finding Comfort

Natalie makes an effort to take things one day at a time. She also keeps her sanity by refraining from doing too much research about leukemia online.

“I checked Facebook and was overwhelmed with other people’s lives,” Natalie said. “I started thinking ahead of myself and that wasn’t what my son was going through. My husband says, ‘Live the day,’ and some days are better than others.”

She makes sure to stay focused on Carlos’ care and what Dr. Akers advises. Carlos Sr.’s uncle and his wife also help them whenever they can.

“I can’t think ahead and you have to have a lot of faith to get through this because it isn’t easy,” Natalie said. “Anyone going through this needs a support system.”

Often, parents blame themselves when their child gets sick. Dr. Akers finds this to be one of the most common ways she gives parents advice.

“Most of the time we don’t know why leukemia happens, but luckily we have excellent treatment options available and most children with ALL are able to be cured,” Dr. Akers said. “It’s also important for parents to take care of themselves and make time for themselves, in order for them to be able to give the best care and support to their child. I think it’s essential to make sure parents understand that it isn’t their fault.”

We thank all doctors worldwide and the incredible physicians at Cook Children's Health Care System for their dedication and contributions. At Cook Children’s, our doctors do more than just fix boo-boos. They give hope and high-fives to little ones and their families. The work they do every day makes a difference in the lives of children.

Slime-A-Doc 2025

Ahead of National Doctors' Day on Sunday, March 30, we celebrate our doctors with some slime! 

On Thursday, Cook Children's employees, patients, and patient families helped us celebrate with some slime at our annual Slime-A-Doc. We had six categories of participants: doctors, nurses, child life specialists, advanced practice providers, volunteers, and members of our administrative team. Watch the Facebook Live here. 

Thank you to everyone who participated! A big shout-out to the Facility Appearances team, and our incredible host, Kimberly Johnson, for making this event possible!

Congratulations to each of our winners:

Administrative Staff: Orlando Chapa, Vice President of Nursing and Patient Care

Child Life Specialists: Erin Reid, CCLS

Volunteers: Steve Stelter

Nurses: Courtney Campbell, RN

APPs: Jay Pearson, PA-C, NP/PA

Physicians: Hector Grajeda, M.D., F.A.A.P.

Patients and families putted their way through whimsical courses inspired by the Lion King, Willy Wonka's Factory, a construction zone, and a speedway. Teams from Volunteer Services, the Linbeck Group, and Child Life designed each course and helped patients through the putting green.

Adding to the excitement were four professional golfers from the Charles Schwab Challenge, happening this week at The Colonial. PGA players Tom Hoge, Tom Whitney, Austin Smotherman, Paul Haley II and Mac Meissner were on hand to meet patients and bring some cheering to the competition.

And keeping with the lighthearted theme, each hole has a bedpan at the end – that’s why it’s called the Bed Pan Open!

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 Alexis Pechek, Unit Secretary, NICU

Luciana Marie entered the world in February 2021, right after an ice storm blanketed Fort Worth. Her birth brought with it an “at birth diagnosis”- we had no prior knowledge of her heart defect or any markers suggesting Down syndrome during pregnancy. Our first glimpse of Luciana filled us with awe, but also a sense that something was different. Babies are often swollen after birth, so we initially dismissed it as that. However, the next morning, we received her diagnosis of Down syndrome and a heart defect, which left us overwhelmed. We struggled to process this unexpected news and question whether we had somehow failed her during the pregnancy. I, as her mother, felt like I had let her down when I was to protect her.

We mourned the child we envisioned and embraced, with open hearts, the child we didn’t know we needed.  Grieving was a necessary part of our journey, and we realized there was no right or wrong way to navigate it. But in the midst of our grief, we began to transform into parents we never thought we could be, thanks to Luciana. Everything we had heard about Down syndrome had been colored with negativity, and we couldn’t help but fear what the future held. But we resolved to turn things around because Luciana, like all individuals with Down syndrome, is inherently worthy.

Luciana's resilience, patience and kindness

Luciana has left an indelible mark on our lives. She has taught us resilience, patience, kindness, and above all, how to be fighters, just like her. We aspire to create a world where individuals with Down syndrome are treated equally and inclusively, where access to care, resources and support come at ease and acceptance is the norm. Luciana ignited a passion in us to advocate for her and show the world her beauty. After all, isn’t that what every parent wants for their child?

As Luciana grows, we wonder about her limitless potential. There are many misconceptions about individuals with Down syndrome, but there are also countless examples of them achieving greatness, whether as athletes, models, actors, public speakers, or students pursuing higher education in college. If we limit their opportunities, how will we ever discover what they are truly capable of or witness them thrive in life?

Raising a child with a disability is undeniably challenging, but it’s also profoundly rewarding. There’s no rulebook for parenting, especially when your child has a disability. We’ve learned to navigate this journey with the help of families who’ve walked this path before us and supportive organizations here in the Dallas-Fort Worth area, such as Down Syndrome Guild of Dallas, Down Syndrome Partnership of North Texas (DSPNT), and Hope Story. Cook Children’s Medical Center has also played a crucial role in Luciana’s care.

To the parents who’ve just received a new diagnosis, we understand the fear, confusion, and uncertainty that can engulf you. I ask you to take it one day at a time and cherish your baby first, the diagnosis second. Don’t miss out on the joy of these precious early moments. Reach out to local Down syndrome organizations, seek support from friends and family, and connect with those who have traveled this journey before you. Support that has your back, guides you to resources, and advocates for individuals with Down syndrome can make all the difference.

What health care workers should know

Health care workers can also be crucial allies for individuals with Down syndrome and their families. They can advocate when needed, ensure proper care, and prevent anyone from slipping through the cracks. Volunteering or donating to local Down syndrome organizations is a tangible way to contribute and recognize their worth.

In addition, using person-first language is essential. It’s “Child with Down syndrome” or “Individual with Down syndrome”, not “Down syndrome Child” or “Downs Baby”. A disability is something they have, not who they are. We’ve also personally learned to eliminate the use of the dreaded r-word from our vocabulary. This word, even when not used negatively, is offensive and hurtful, implying that people with Down syndrome are less competent. The words we choose to describe people shape how we treat them, and changing out language can signal a shift towards greater inclusivity.

Luciana, whose name means “light” and “glowing soul”, truly lives up to her name. We chose this name before we even knew about her diagnosis, something tugging at us that she would need a strong and special name. Love radiates from every inch of her, and if you ever have the privilege of her embrace, you’ll carry it with you, forever. Luciana has been a fighter since day one, and nothing will deter us from advocating for her every single day. While this journey wasn’t what we expected, we know for a fact, it was undoubtedly what we needed in our lives.

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.”

Hospitals can be complex to navigate, especially for the health care novice, but family friendly tech features integrated into every inpatient room at Cook Children’s Medical Center - Prosper keep children and families in control of their hospital experience and make their health care journey easier. 

While these rooms appear much like any hospital room, the technology that powers them puts everything the patient may need or want during their stay right at their fingertips, from access to their health information to conducting a telemedicine visit with a specialist to ordering food and selecting in-house entertainment. And it can all be viewed and operated from the patient or family’s own smart device through an easy-to-use app, or from the television in each patient room.

When designing patient rooms for the Prosper facility, which opened in January, Cook Children’s wanted to match the innovation that patients and families experience at every turn throughout the facility, from the life-size digital display in the front atrium to the operating rooms equipped with technology that allows real-time remote viewing and physician collaboration. The teams designing the rooms, particularly the technology behind them, conducted extensive research and asked patients and families for feedback on what tools would make their stay easier.

“The majority of ideas we heard centered around empowering patients and their families to have more control of their stay and experience, having clear and concise communication and a better understanding of who was a part of their child’s care team,” said Nicole Yowell, digital products manager for the inpatient experience and leader of Cook Children’s Virtual Health program.

All of these features and many more were built into an app for patients and families that puts control of their experience right in the palm of their own hands.

Complimentary Care

When families download the app during their hospital stay, they can view and interact with much of the behind-the-scenes workflow involved in their child’s care. If, for example, the patient is awaiting lab results, families can view those results in the app once they are posted in their child’s electronic medical record. They no longer have to rely solely on a nurse or other provider to update them, giving waiting families better access to their information.

“The goal is really to bring visibility, from a patient and family experience perspective to everything that the staff is doing,” said Danika Meyer, product owner for patient experience at Cook Children’s. “So when we think about our clinical strategies for informing patients along the way, a lot of that is dependent on interactions with our care team, which is a huge part of what we do. We didn’t necessarily want to take any of that away, but more so compliment it with the technology already available to us so that families aren’t kept waiting longer than necessary and our clinicians are better supported to focus on patient care.”

Features like an in-app TV remote, food service link and much more allow patients to access creature comforts when and how they want them for a customized, individualized experience.

“A lot of times in health care, if not all the time, everybody's thinking in terms of outcomes like an illness has been cured or a wound has been healed, and a lot of the softer side of things is overlooked,” said Lesley Wager, director of digital products at Cook Children’s. “But our outcomes are also about the experience and the journey, right? The stuff that parents and kids are going through is scary, and while a little bit of a delight feature that we add in any of these rooms or in our apps might not change the fact that their bone was mended. It does help the general overall outcome for their mental health and their emotional wellbeing. That's incredibly important to us.”

Room Service

In addition to the app, the communication portals in each patient room are fully digitized and populated with information in real-time.

Traditionally, in-room whiteboards are used to communicate information about the patient’s care team and daily schedule. They have to be updated manually by a nurse or patient care technician using a dry-erase marker. 

The new generation of whiteboards at Cook Children’s - Prosper are both digital and interactive. In addition to information on the patient’s care team, they display mobility and pain scores, educational assignments and completion, meal times, food offerings, room temperature control, interactive requests for assistance and hospital information sharing. 

Outside of each room, digital door signs use icons to communicate important patient alerts such as fall precautions and isolation procedures to the patient’s care team, family and visitors so they can take the appropriate safeguards before entering a room.

“The patient-centered room is the digital room of the future, allowing patients and families to interact seamlessly with technology through the digital whiteboard in the room for patient care information as well as the ability to watch TV, stream movies and play games,” said Gina Basham, Cook Children’s assistant vice president, Inpatient Clinical Apps. “In the future, we hope to expand these in-room technologies to include patient schedules and further interaction with MyChart beyond just the mobile app. Incorporating these features is in keeping with our commitment to do everything for the child.”

Collaborate and Communicate

Integration between multiple tech platforms, and collaboration among several health system departments and tech vendors, help make the app and other patient communication tools the seamless supporting players for the care and comfort of patients that they are. All of these innovations talk to and inform each other.

“We had to do a multi-level integration across multiple technologies so that when something happened in one, it triggered a workflow in another,” Yowell explained.

For example, when a nurse is assigned to a patient in the electronic medical record, that information also flows to the nurse call system as well as the in-room digital whiteboard and the patient’s TV. This eliminates the need for nurses to write on the whiteboard who they are at each shift change, so the patient is informed about who is caring for them before they even enter their room.

These tools help Cook Children’s communicate with and care for a tech-savvy generation in the way they prefer to consume information. But, should a patient not have access to a personal device or care not to use one, there are multiple ways to communicate and access the information and features offered in the app.

Telemedicine appointments with specialists can also be streamed on the TVs in patient rooms, giving patients access to specialists all across Cook Children’s Health Care System. When a middle-of-the-night consult is needed, these features allow physicians to conduct a telemedicine visit from their home. Eliminating the need for a physician to make a late-night trip to the hospital when it isn’t necessary gives patients quicker access to care and saves the physician time, energy and sleep for their next busy workday.

After Your Stay

Use of the app isn’t limited to the inpatient stay. After a patient gets home, access to the app remains available to inform and empower them in the next phase of their health journey. Parents can view their child’s discharge instructions, medication list, information about their care team and follow-up care, for example, and have this information at their fingertips to share with their child’s primary care physician, who may or may not be a Cook Children’s doctor.

When patients are empowered with tools and information that make their lives easier, they’re more engaged with their care and more confident in their health journey, all of which health tech experts say lead to better overall outcomes.

“At Cook Children's, we talk about creating moments of magic and this definitely brings some magic to the experience for the patient and their family,” Yowell said. “It really is based on improving outcomes for their physical health and mental and emotional wellbeing by providing them the information that they need to make educated decisions and really understand what's going on in their care, along with giving them some delight features that make their time with us more comfortable.”

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.” 

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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

Join us for “Under the Lights,” an inspiring story about a teen with epilepsy, followed by a Q&A with the film's writer and director Miles Levin and executive producer Greg Grunberg. This event is hosted by Scott Perry, M.D., an epileptologist and head of Cook Children’s Jane and John Justin Institute for Mind Health. 

This event begins at 6 p.m. with light appetizers, followed by the film screening and virtual discussion. Registration is required to attend. Get your complimentary tickets here.

The Story

Under the Lights is the story of Sam, a boy with epilepsy, so desperate to feel like a normal kid, he goes to prom knowing that the lights will make him have a seizure. 

Cinema has historically stigmatized and ignored people with epilepsy. A demographic of 1 in 26 who have almost never been represented authentically on screen, and suffer from brutal stigma every day. Written and Directed by filmmaker with epilepsy, Miles Levin.

Learn more about "Under the Lights" here.

Cook Children’s employee Danny Peltier, his wife, Sarah, and their two children are preparing for a big adventure. In November, the family will travel to Walt Disney World with Kidd’s Kids, a nonprofit organization founded by late radio host sensation Kidd Kraddick and dedicated to creating special memories for families with life-altering or life-threatening conditions.

Danny and both of his children live with a condition called Hereditary Spastic Paraplegia (HSP),  an inherited neurological disorder that causes weakness and stiffness in the legs. The Peltiers were nominated for the trip by a parent of one of Sarah’s students. 

“I've been listening to the radio show my whole life and I know they get thousands and thousands of applications a year and I didn't expect anything to come out of it,” said Sarah, a 6th grade math teacher in Birdville Independent School District. “We were all very surprised whenever we walked into the Cook Children’s Child Life Zone a few weeks ago and were told we had been chosen.”

The Peltiers learned they would join a host of other families on the trip during a surprise announcement in August at Cook Children’s Medical Center where Danny is an employee and several Cook Children’s clinicians serve as medical volunteers for the annual Kidd’s Kids adventure. 

Rising Above

Danny has never been afraid of adventure, even with a condition that impacts his gait, balance and ability to walk unencumbered. In his spare time, you’ll find Danny wheeling around a sports field or court, adapting the game so that he and others in wheelchairs can challenge their physical skill and exercise their competitive spirits. He is a long-time competitor with RISE Adaptive Sports. 

Adapting to his circumstances and rising to challenges is something Danny has done since childhood. 

“I've always adapted my situation to work best for me,” Danny said. “I didn’t have a wheelchair growing up, but all through elementary school, everything that we did, I just kind of made it work. We bent the rules to make it fair for me to be able to play. Then, in college, I got a wheelchair. Seeing how much easier it was for me to get around and move on campus in a wheelchair opened up my eyes to how my life was going to be completely different."

Danny joined other wheelchair-bound classmates and began playing all types of sports, including basketball and football. Together they identified ways to adapt a number of different games for the disabled community.  

Family History Unlocks Mystery

As a kid, Danny, his family and his doctors believed he had cerebral palsy. There was no reason to question the diagnosis. It made sense given his symptoms. 

Then came the birth of his daughter, Evelyn, now 10. When Evelyn began to walk, Danny and Sarah noticed she had a similar gait as Danny when he was a child. But cerebral palsy is not hereditary, which raised some red flags and led the Peltiers to ask a lot of questions. 

Was it possible that Danny was misdiagnosed all those years ago? Could his condition actually be genetic? The family wasn’t aware of any relatives with a hereditary condition like Danny’s. Until the birth of Evelyn, there was no indication of a familial link. 

The Peltiers had Evelyn undergo genetic testing to try to pinpoint a diagnosis, something that wasn’t readily available to Danny when he was a child. The results unlocked a generational mystery. 

Evelyn had HSP, and given HSP’s link to genetics, that meant Danny likely had it, too — a theory that genetic testing on Danny ultimately proved.  

There are various forms of HSP, with varying degrees of symptoms and complications. Danny and Evelyn have spastic paraplegia 3A. 

“Whenever we got our daughter diagnosed, they had only identified maybe two dozen variations of HSP, and now there's probably another dozen or two that they've identified,” Sarah explained. “Genetic wise, they've been able to identify the genes causing the condition, and the variations can range from like our family where it's pretty mildly affecting the lower limbs to full body involvement affecting intellect and speech, upper body control and a whole bunch of cognitive function. Some are progressive, some are not. Fortunately, 3A is not very progressive.”

After the diagnosis discovery, Danny wanted to dig deeper into his family history knowing there had to be others in his genetic line with the condition. Danny completed an ancestry kit, unlocking even more of the mystery.   

“We were able to track down other family members that we didn’t know of that actually had the same diagnosis,” he said. 

An Empathetic Example 

While it was surprising, the revelation of Danny’s diagnosis didn’t change his response to his circumstances. He did what he always does — adapted. 

Sarah had to adapt in her own way, too. 

“Accepting that the future looks different for your children than you thought it would is definitely a grieving process,” she said. “I had to allow myself the space and time to do that. But for me it was just really important that that was away from the kids. My closet floor saw plenty of tears, but in front of the kids, we were really excited about trying out this new doctor's office, or we tried to make everything as fun as we could because we knew that this was their new reality, and we didn't want them to ever feel like this was any sort of negative experience for them.”

Now, they’re both teaching Evelyn and their 6-year-old son, William, who also was born with HSP, to do the same. The family water skis with RISE Adaptive Sports and Evelyn is a national gold and silver medal-winning swimmer who has competed against Paralymic-bound athletes. William plays baseball and will soon begin playing wheelchair basketball.

Danny’s challenges give him unique on-the-job insight for the Cook Children’s patients and families he encounters daily, too. As the practice manager for Cook Children’s Outpatient Psychiatry, Danny is a real-life model of resilience for patients struggling with their own challenges. 

He often uses his wheelchair as a starting point for connecting through conversation. 

“I try to bring kids out of their shell a little bit and show them what they can do in a chair and let them ask questions,” he said. “We’re always inviting anybody we see in a chair to come play sports with us and telling them how to get involved in adaptive sports. Just letting people know that it’s not the end of the world to be in a wheelchair or have a disability. There’s still a lot of options and things that you can do.”

No doubt, the entire family will be as much of an inspiration to those they encounter at Walt Disney World in November as they are to those at home.

Related Stories:

2 Cook Children's Employees Surprised with Disney Trips for their Families Thanks to Kidd's Kids

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.

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If you talk to Caitlin Schwartz for even a few minutes, you will learn she is wise beyond her years. In the last two years of her life, she has endured more than most can even imagine. Still, she wears an infectious smile and shares her story with clarity, humor, and resilience. 

Caitlin’s Diagnosis

In September of 2021, Caitlin woke up to a pain in her right shoulder. She thought she might have slept on it wrong or hurt it in gymnastics, which she practiced once a week. Caitlin and her mom, Jessica Allen, initially didn’t give the pain much thought. But when it grew progressively worse over the next couple of months, they decided to make an appointment with her pediatrician.

Four weeks later, a pediatric orthopedic specialist took X-rays of Caitlin’s shoulder and initially suspected that her shoulder blade was broken. Caitlin got an MRI that same day and received the results a day later.

Jessica, who is a teacher, was in her classroom when she got the life-changing phone call. Caitlin had not broken her shoulder blade — she had cancer. Jessica first took Caitlin to Cook Children’s as soon as possible and was admitted just a couple of days later. 

“They diagnosed me with Ewing Sarcoma in my right shoulder blade,” Caitlin said. Ewing Sarcoma, named after Dr. James Ewing, who first described the tumor in the 1920s, is a rare type of bone cancer that most commonly occurs in children and teens. By the time Caitlin’s tumor was discovered, it was so large that it covered her entire shoulder. Thankfully, her cancer was stage two and was isolated to her shoulder.  

Only the Beginning

For the next six months, Caitlin completed chemotherapy at Cook Children’s. Starting in May of 2022, she underwent a total of 36 sessions of proton radiation on her shoulder at Texas Oncology. Caitlin experienced every side effect in the book from chemotherapy, including hair loss, nausea, and weight loss. She also got radiation burns, for which she had to take special medication.

Miraculously, by the time Caitlin had finished all of her treatment in October of 2022, her scans were clear. She and her family enjoyed a huge celebration for her birthday, the end of chemo, and achieving remission. Little did they know, Caitlin’s battle was far from over. 

Caitlin went back to school for only three days before she started to feel extremely sick. Jessica brought her back to Cook Children’s for emergency lab work. Shortly thereafter, Kenneth Heym, M.D., of Cook Children’s Hematology and Oncology, diagnosed her with Secondary Acute Myeloid Leukemia (AML). 

“She just totally threw everybody for a loop when she came into the hospital and her blood counts were abnormal,” Dr. Heym said.

Caitlin had contracted AML from one of the chemotherapies used to treat her Ewing Sarcoma. “Secondary leukemia can happen after treatment for solid tumors like Caitlin’s, but it’s pretty rare,” he says.

Jessica wasted no time in asking Dr. Heym for a prognosis — and he told her the survival rate for AML was very low.

“He told Caitlin she had a less than 50% chance to beat this,” Jessica said. According to Caitlin, Dr. Heym had “never been so straight up.”

“We know that secondary leukemias that are caused by chemotherapy are very, very difficult to treat,” Dr. Heym said. “And if you want to cure them, your only chance is going to be bone marrow transplants.”

The problem is, bone marrow transplants won’t work unless the patient is in remission — which is very hard to achieve with AML. 

“She was understandably upset because she was looking forward to being done,” Dr. Heym said. “But she still maintained that positivity and that smile and that snarkiness and all of those features that just endear you to her immediately.”

Restarting

To treat Caitlin’s AML, Dr. Heym started her on what he calls “blow you out of the water” chemotherapy. It was extremely harsh on Caitlin’s body and ultimately unsuccessful. Luckily, he found a clinical trial at MD Anderson Cancer Center in Houston for patients Caitlin’s age with her leukemia’s specific type of genetic abnormality. 

Caitlin and her mom headed to MD Anderson. After a few trips back and forth, Caitlin was admitted in January of 2023 to start the clinical trial protocol. Caitlin started on a new form of chemotherapy, which her body responded to much better than the first.

She also began the clinical trial drug itself — a Menin inhibitor, which is in clinical development for the treatment of genetically defined subsets of acute leukemia.

Once again, Caitlin made a remarkable recovery. After completing her clinical trial, her AML was gone.

“They said she was the fastest person to ever achieve remission there,” Jessica said. According to Dr. Heym, Caitlin’s remission is “nothing short of a miracle.”

The next step in Caitlin’s treatment was her bone marrow transplant.

“She's basically restarting her body, but with my good cells and my good blood in hopes to keep her cancer away and prevent relapse,” said Jessica, who was her transplant donor.

Caitlin completed her transplant on May 4 of this year. Her family and doctors refer to that date as her “rebirth day.” The aftermath was extremely tedious on Caitlin’s body, and she was hospitalized for almost seven weeks.

“Nothing Short of a Miracle”

Despite wreaking havoc on Caitlin’s body, her bone marrow transplant was incredibly successful.

Though Caitlin’s labs look great and she’s been doing exceptionally well, she has run into some hiccups with side effects. She developed a hematoma, had some chemoport issues, and developed pericardial effusion, which is a buildup of fluid around the heart. She is still fighting to get her immune system back to normal and even though she is in remission, she is not out of the woods quite yet.

“There is still a good chance that her leukemia is going to come back, and if it does, it's going to be that much harder to treat,” Dr. Heym said. “But she’s beaten the odds so far in terms of where she's gotten and how well she's doing, so if anybody’s going to continue to do that, it's going to be Caitlin.”

Caitlin recently got cleared to start taking her Menin inhibitor again post-transplant. Because transplants wipe out all immunizations, she will stay home from school for another year and start immunizations in the spring. Her original Ewing tumor is still on her shoulder, but it’s much smaller than it was and will eventually turn into scar tissue. Moving forward, Caitlin will continue to have follow-up appointments for her side effects and will be closely monitored to ensure her AML and Ewing Sarcoma stay in remission. 

Finding Joy and Sharing Smiles

Throughout her battle, Caitlin has found joy in the hospital’s fur babies and friends she’s met along the way.

“If a dog wasn't hanging around, she would ask a nurse to go find her one,” Jessica laughs.

Caitlin also made friends with other kids and families wherever she went, whether it was on the HO floor at Cook Children’s, at MD Anderson, or anywhere in between. “We joked that she was the mayor of the floor when she was here because she would just walk around talking to everybody,” Dr. Heym says with a smile.

Caitlin has also selflessly volunteered to participate in Cook Children’s research studies. “She wanted to help other kiddos from the beginning,” Jessica said. “I also told her that other kiddos need to hear her story because she might have a friend who’s diagnosed with something similar one day.”

Right now, Jessica and Caitlin are taking every new day in remission as it comes and leaning on their village of family and friends for support.

“We're working on just being able to be a kid again and do all the stuff we've missed out on the last two years,” Jessica said. “We’re just looking forward to some kind of normalcy after all of this.”

Through it all, Jessica and Caitlin have learned to cherish the time they have together.

“When you have to watch your kiddo fight for her life, it just forces you to move everything else to the back burner,” Jessica said.

She admits that when Caitlin was diagnosed with AML, she didn’t think she would make it to Christmas. Caitlin, with her tenacious spirit, chimes in, “I didn’t think that!” It’s no wonder cancer has been no match for her.

“No child that age should be challenged as much as she has,” Dr. Heym said. “But she continues to show us that she's going to meet every challenge with courage, grace, humor, and attitude. Nothing, whether it's cancer or the treatment, is going to stop Caitlin from being Caitlin. And I feel lucky to have been able to help take care of her.”

To keep up with Caitlin’s journey, follow Jessica on Instagram @thestoryofthree. 

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.”

By Heather Duge

Valerie Shorten, BSN, RN, and her son, Marquis Shorten, are no strangers to overcoming obstacles. Each one has led them to where they are today.

Marquis faced a life-changing diagnosis at Cook Children’s in 2022 – the same hospital where his mother Valerie works. She was determined to become a nurse after her brother was killed.

“I always thought about what I could have done to help him had I been there,” Valerie said. “That’s when I knew nursing was my calling.”

Nursing Journey

In 2011, Valerie found out about an open position at Cook Children’s – a place she had visited a few years before when Marquis had a minor injury while playing with his brother.

“I remember how caring everyone was and thinking with three boys it was probably not the last time I would be there,” Valerie said.

After 15 months of working in Food Services, she applied for a secretary position in the Neonatal Intensive Care Unit (NICU). In May 2021, she graduated from nursing school and started as a nurse resident at Cook Children’s -- 10 years to the day of her first day in the cafeteria. She rotated through all the ICUs and the emergency department in one year. Now she is a nurse in the Cook Children’s NICU.

“I know that no one chooses to come into this hospital,” Valerie said. “You never know what a person is going through, so I make sure I always give the kind of treatment I would want for my child.”

Shocking Diagnosis

In April 2022, Valerie was in the middle of her nursing shift when she received a text from Marquis that read “My spine hurts.” She told him to take ibuprofen since she thought it could be related to his running.

“Marquis is a runner and was No. 1 in the district,” Valerie said. “He was slated to run in the regional meet to see if he would qualify for state. I thought the pain could be from a pulled muscle or running injury.”

Valerie told him to rest and let her know if it worsened. Eventually, Marquis drove himself to the ED at Cook Children’s and at that point could not feel his right leg.

“I met him at the ED but didn’t think it was anything too severe,” Valerie said.

An MRI revealed a spinal epidural hematoma, which is like a pooling of blood on the spine, and Marquis underwent emergency surgery. If too much time passed, Marquis could have become paralyzed.

“Everything was a blur and I remember being overly emotional as Marquis continued to lose the feeling in his legs,” Valerie said. “But I knew he was at the right place.”

Marquis was quickly wheeled to the operating room where Medical Director of Neuro-Trauma, and pediatric neurosurgeon Daniel Hansen, M.D., removed the large blood clot that was compressing the spinal cord.

Recovering Physically and Mentally

Valerie became anxious thinking about Marquis's mental state when he woke up and realized all he worked for was not going to happen that year at the regional track meet, if at all. 

“A nurse pulled his father, DeMario, and me aside and told me that when Marquis woke up, he asked when he would leave that day because he had a track meet in a few days,” Valerie said. “The real pain came when all the times were posted from the race he missed.”

Valerie and DeMario helped Marquis work through his emotions but did not let him stay down too long.

“I told him he could decide to lay there and be sad or decide what’s going to happen next,” Valerie said. “My life motto is that you are the writer of your story.”

Nurses realized how hard it was for Marquis to face the reality that he missed the regional meet and was not sure what running would look like in the future. During the 10-day stay in the Pediatric Intensive Care Unit, Marquis says the nurses went above and beyond to bring him comfort. On a particularly hard day, the café was out of Chick-fil-A milkshakes, so the nurses gathered all the supplies and made him one.

“They did everything I needed before I even asked for it,” Marquis said. “They fixed my pillows a certain way, brought me the Gatorade flavor I liked with a straw, broke up pills because I couldn’t move my neck to swallow and positioned my toes for me when I couldn’t move them.”

Back on Track

Valerie says everyone was surprised at how fast Marquis progressed. Throughout his healing journey, he used a brace, walker and wheelchair. After lots of hard work in physical therapy, he was cleared to jog four months after surgery and in January 2023 ran in his first race since surgery at Texas Tech University.

“My parents kept me going,” Marquis said. “My track coaches Jesse Heard and Sa’Donna Thornton also were there for me. Coach Heard gave me a love for track and all he instilled in me is a big reason why I treat everyone with kindness. He has sacrificed countless hours just to help me succeed. Coach Thornton played a huge part in helping me gain my confidence back and keep my positive outlook on the situation. I knew God had a plan and it would turn out OK.”

A Lifelong Dream Come True

Marquis says coming back from a major surgery has only made his passion for running stronger, and he wanted to prove to everyone he was just as good. He has accomplished that and more. When he graduated high school in May 2023, he received the Optimist Award. This fall, Marquis will attend Texas Christian University on a full-track scholarship – a goal he set for himself at only 10 years old.

“Marquis decided in fourth grade that he would one day attend TCU,” Valerie said. “Jokingly, I expressed how his father and I did not budget for TCU. At the time, our fourth grader looked at me on the car ride to school and said, ‘Don't worry, I'm going to get a scholarship.’ His dreams came true.”

“The most gratifying part of my job is seeing kids through their illness to the other side,” Dr. Hansen said. “For Marquis, that means a life that is everything he has always wanted.”

By Heather Duge

Cook Children’s Emergency Department nurse manager Kara Dorman has seen an alarming trend – a significant increase in patients coming in with a seemingly invisible problem. Patients may enter the ED for an injury or illness but have a mental health concern that also needs to be addressed.

“As we track suicide screening numbers, it has been horrifying and mind-blowing to see all these kids who visit the ED for medical problems and screen positive for suicide risk,” Dorman said. “These are kids we wouldn’t have known about if we didn’t ask.”

Many times asking the hard questions is the most challenging part of identifying those who need help. That’s when Team HOPE, a specially trained group of 25 employees at Cook Children’s, enters the picture.

Dorman and ED chaplain Cameron Brown lead the team, which includes patient care technicians, paramedics, nurses, security officers, chaplains and child life specialists. The team meets monthly, participates in education and shadows the inpatient psychiatry unit for eight-hour shifts.

Dorman and Brown proactively round on patients using Trust Based Relational Intervention (TBRI) to build early rapport. TBRI is an attachment-based, trauma-informed intervention that is designed to meet the complex needs of vulnerable children. The team uses the Ask Suicide Questions (ASQ) screening tool and TBRI training has been instrumental in the screening process.

The ED screens patients during intake to ask questions about their mental health. From January through July 2023, 405 patients ages 8 and older who came to the ED for medical conditions were positive for being at risk for suicide and 19 were suicidal at the time. In 2022, Team HOPE assessed 32,000 patients ages 8 and over who came to the ED for medical conditions – 640 were positive for being at risk for suicide and 22 were suicidal at the time.

Building Early Connections

If a nurse in the ED feels like they need help, they can call Team HOPE. An intake therapist will perform a behavioral health intake assessment and provide tailored resources for the patient to get help.

Oftentimes, patients come in and don’t want to speak to anyone.

“A huge factor in saving lives when treating mental health illness is connection,” Dorman said. “Good eye contact and modeling a calm demeanor when entering the room is the first thing. We share power and control with patients such as giving them choices of what drink they would like to take with their medicine and offering green scrubs instead of an open gown. We talk about transitions of care ahead of time and introduce their new nurse before shift change.”

Behavioral health carts filled with games, clay, stress balls, model magic and journals are other tools the team uses for distraction and to get rid of nervous energy. Brown not only provides patient families with support but also the ED staff. She checks in during each shift with team members.

“I ask how they are coping and assess how they are handling things,” Brown said. “I help them when patients are dysregulated and give them permission to ask for help.”

Sometimes that means walking through a scenario such as thinking through how to go in the patient’s room while maintaining a calm presence. 

Suicide Prevention Training

Dorman and Brown attended QPR training, which is an emergency response training for someone in crisis, hosted by the Jordan Elizabeth Harris Foundation. This training helped them learn how to ask difficult questions when concerned about someone having suicidal thoughts.

“This has been helpful in having conversations with friends, family, fellow coworkers and when checking in on each other in different units,” Dorman said. “Team HOPE members are a resource for not only our patients but for ED staff members as well. The QPR training helped our team gain knowledge and feel empowered to role model that having conversations matters.”

Ellen and Tom Harris established the Jordan Elizabeth Harris Foundation in 2014 after their daughter died by suicide. They know how unexpected depression and suicide can be after experiencing it with their daughter.

Jordan was valedictorian of her high school class, a National Merit Scholarship winner, a Stamps scholar at the University of Michigan, an athlete, musician and a friendly, compassionate young woman. The JEH Foundation honors Jordan’s life by raising money to support research on depression and offering training to help people recognize signs of depression.

"Jordan was the kind of person you would never expect to take her life,” Ellen said. “She was a wonderful, kind, funny and loving person with loads of friends and interests.”

After Jordan developed depression during her senior year of college, Ellen and Tom brought Jordan home until she felt ready to go back. Her upbeat personality hid the severity of the depression. Ellen said the confusing part of depression is that people who take their lives don’t want to die – they just don’t see any other way out of the dark hole.

“The night before Jordan passed away, she was on her computer searching for a therapist,” Ellen said. “She was trying to find a way out.”

Ellen and Tom’s goal through the foundation is to help people out of the dark hole. They offer free QPR training to the public.

During the 45-minute sessions focusing on Question, Persuade and Refer, people build confidence in asking the hard questions about suicide, learn how to persuade someone to seek help and understand referral options.

The sessions also include myths and facts about depression, nationwide statistics about the depression epidemic, ways to be aware of someone struggling and verbal versus nonverbal cues. Dorman had the desire to bring their training to Cook Children’s and four months ago 25 employees at the hospital participated in a session.

“If we can save one life, everything we’re doing has been worth it,” Ellen said. “I’m thrilled to provide training for employees at Cook Children’s. It is critical hospitals have this training because the earlier you can catch depression and start treating it the greater the outcome.”

Dorman said one interaction in the ED can be the moment that changes the trajectory of a patient’s life – bringing them hope in a dark time.

“We want to connect with these patients and empower them to seek help,” Dorman said.

September is National Suicide Prevention Month. If you are concerned about a child’s mental health, please reach out to one of these resources or your child’s pediatrician. It is important to get help early so that children can get the support they need.

“Our services have grown and we are excited to provide a more convenient location for our families that are visiting the specialty clinic offices,” said Ozioma Olowu, AVP, Pharmacy Administration . “With this new location, we are expanding our ability to dispense more specialty medications for our medically complex patients and have already begun work with clinic staff and their new dedicated pharmacy teams.”

“We are easily accessible from our new parking garage, which has convenient, reserved parking spaces for retail pharmacy customers on the ground floor! We offer the same unique services our families have come to appreciate at our first location such as compounding and flavoring medications,” Olowu said.

Retail Pharmacy

• Address: 1500 Cooper St Suite 1541
• Phone: 682-303-3900
• Email: DodsonRetailPharmacy@cookchildrens.org

I do not have adequate words for the pure joy and humility I felt this past week. Our family was chosen to attend the Kidd’s Kids 2023 trip to Disney World and was surprised alongside another incredible, resilient family! 

I was encouraged by some of the most incredible coworkers to apply for this trip. Over the past year and a half, these people have walked alongside our family with shared tears, unexplainable generosity and constant love. My husband and I were reluctant to apply since there are so many families and kiddos who would benefit from a trip like this.

I’ve volunteered and worked at Cook Children’s for two decades and have seen countless kiddos be chosen for Kidd’s Kids. I never thought I would ever be in a position where my own family qualified. However, as I reached out to my friends and coworkers for advice and thoughts, I was only met with encouragement to put in the application. We had just decided to cancel our plans to go to Disney later this year due to finances, so we ultimately decided we should put in the application and see what happened.

Our middle daughter, Averly, was diagnosed with a low-grade glioneuronal (brain) tumor in April 2022 after having a seizure at home on March 29th. Our PCP, M. Kathleen Powderly, M.D. of Cook Children's Pediatrics Magnolia, ordered an MRI in addition to many other tests and within a week found the tumor. 

The same week, we were attending my grandfather’s funeral and grappling with shock and grief. The next five months consisted of many doctor appointments seeking opinions from all over the country. 

This time last year, our daughter was headed into a nine-hour brain surgery to remove her tumor just behind her motor cortex that controls her right side. Her surgery was on Aug. 24, 2022. Our neurosurgeon was able to resect 98-99% of her tumor. She had right-sided weakness and loss of feeling in her right foot and great toe following surgery; however, she has regained nearly all her feeling and is very strong. Following surgery, Averly has followed up every three months at St. Jude Research Hospital to monitor the small amount of residue tumor and will continue to follow up there indefinitely.

All three of our girls have been so strong and resilient. Through moments of sadness and frustration, they have come out on the other side more beautiful and with deeper faith. Topics I never thought I would be addressing with them, though, have become normal conversations in our home – tumors, cancer, death, surgery, and countless stories of others we have met along the way. Averly has unwavering faith and has maintained an incredible sense of humor since her tumor (affectionately named Wally for his comparison to walnut-size) was evicted. My other girls have grown in empathy and flexibility. Yet – they are kids and this has all been too much at moments. 

When we returned from our vacation, I was expecting to come home to news about our selection status with Kidd’s Kids, but we had no mail. I dreamt Sunday night that we weren’t accepted. So in worry, I reached out to Daniel D. Guzman, M.D., on Monday. While he didn’t have an answer for me, he did need our family for a photo shoot for Aim for Safety on Tuesday. It was only the second day of school, but I figured there wouldn’t be a better time and this would be a fun experience for the girls.

I pulled everyone from their lunch hours on Tuesday and we headed up to the hospital. He had told me there would be another family with us, so I wasn’t surprised to see Danny Peltier and his family. As we walked into the Child Life Zone, I could never have envisioned that moment. 

So many precious faces staring back at all of us – “You’re going to Disney World!” It was the pinnacle of support and love! As I looked at my kids’ faces, my eyes blurred with tears. 

Averly had nothing but PURE joy and excitement. Emilynn, my oldest, was moved to tears and that just undid me – tears of joy and disbelief. My sweet Maelee was so confused and overwhelmed that she melted down. #reality

She was such a picture of receiving great news after hard times…sometimes you just don’t know how to step out of the hard. Eventually, it made sense to her and I can report that she is THRILLED!

Averly immediately bonded with the Peltier’s daughter. As I surveyed the room, I saw all those who had loved and supported us from the first day with true extravagance! I was so overjoyed for my girls.

When I met Kidd Kraddick at Cook Children’s a little over 20 years ago, I never imagined my future family would benefit from his love and legacy! This is going to be a trip of celebration for our family and all the other Kidd’s Kids families – celebration of resiliency and choosing to say ‘yes’ to hard! We are deeply grateful and humbled for this opportunity! 

Your child’s urine colors can range from clear to dark yellow to orange, depending on how hydrated they are. But what about red, brown, green or blue?

Pink or red urine may be due to foods or drinks, such as beets or blackberries, but could also be from blood in the urine. Things like urinary tract infections, trauma, kidney inflammation, stones, malignancy, medications, and urologic problems could be the cause of bloody urine.

Brown urine, like cola-colored, could also mean there is blood present due to kidney inflammation. Liver issues or muscle breakdown from working out excessively could cause brownish urine.

Parents should take their child to the emergency department if there is pink, red, or brown urine associated with pain, edema or high blood pressure.

Different food dyes or medicines can cause blue or green urine. Some types of bacteria that cause urinary tract infections can also turn urine these colors. Rare genetic diseases can also lead to these color findings.

See a doctor if your child’s urine color is concerning. Your child may be referred to a pediatric nephrologist or urologist.

Checklist:

• Is my child taking any medicine that could cause the unusual color?
• Did my child eat something with food dye or coloring?

RELATED:

How to Tell if Your Child is Dehydrated (checkupnewsroom.com) 

At Cook Children's, taking care of our employees is a top priority because we know that employees can serve our patient families best when they feel healthy, happy and strong. To be acknowledged of our dedication to our employees, specifically for our Healthy Me Wellness Program is outstanding.

Healthy Me is Cook Children’s voluntary employee wellness initiative to create an overall culture of health and wellness for all of our employees. The program offers a range of unique benefits available to all employees, including our onsite 24/7 fitness center called the Wellness Zone, making it convenient to incorporate exercise into everyone’s daily routine. The Wellness Zone is staffed with fitness experts who offer group exercise classes and personalized fitness assessments, enhancing the overall wellness experience. Within the last year, 47% of our employees have participated in 589,222 workouts.

Beyond physical health benefits, the Wellness Zone also plays a crucial role in supporting employees' mental well-being, with yoga classes seven days a week. The Healthy Me program also includes webinars about burnout and stress, financial planning, and healthy eating, and maintains a wellness room where employees can take a break and relax with adult coloring books, journals and other resources.

Cook Children's would not be able to provide amazing services without its employees. Very special thank you to our Healthy Me Wellness Program team for all they do to support all 9,000 employees.

Shalyn Coulombe, RN, of Cook Children’s Medical Center – Prosper says spreading joy is one of her favorite things to do.

“I like to add a little happiness and smiles wherever I can,” Coulombe said.

Lately, that place has been the windows of rooms in prep/recovery at Cook Children’s in Prosper so when patients are taken to their pre-operation room the first thing they see is a whimsical character. Coulombe draws characters such as Peaks the Dragon, Bluey, Olaf, Little Mermaid, Moana, Rapunzel and Mario.

Coulombe’s love for drawing began a few years ago during college. While at Disneyland, she visited the animation station and drew Mickey Mouse with a Disney artist. She had no idea her newfound passion would become a highlight of her day at work.

“Being in the hospital can be super scary for children and seeing the characters and familiar faces for a brief moment can bring comfort,” Coulombe said. “For many kids who are having anxiety being in a new place with new people, the art flips the switch and lets them focus on something else.”

Her masterpieces have brought smiles to more than patients and passersby – they are a much-anticipated part of her coworkers’ days. Many of them have young children and have ideas for the next drawing. The team takes part in polls with three options to vote on. Coulombe says it has become a bonding moment for the whole unit.

“I feel like I can make a difference even in the small things like this,” Coulombe said. “It gives a more personal touch to the patient families’ experience and hopefully adds a little magic to their days.”

Today, Cook Children’s Medical Center - Prosper launched a new testing and diagnostic service that allows children experiencing seizures to receive care closer to their homes and communities. The test, called continuous electroencephalogram (EEG) monitoring, reads electrical activity in the brain and is an essential tool for detecting and diagnosing a seizure disorder. 

Prosper resident and father of two, Kevin Greene knows all too well the challenges of having to leave your community to seek medical care and how that impacts a family. In February, the vice president and administrator at Cook Children’s – Prosper, Greene and his wife Christy, took their 9-month-old son Matthew to the emergency department at Cook Children’s Medical Center in Fort Worth after he experienced what appeared to be a seizure episode at their home.

The Greenes began to notice symptoms in Matthew a couple of weeks prior to the event and consulted with Damian Campbell, D.O., a Prosper-based pediatric neurologist and member of Cook Children’s Physician Network.

“We took Matthew to see Dr. Campbell, who is amazing, and we were watching his condition closely, but following this episode he encouraged us to go to our medical center in Fort Worth for further evaluation,” Greene said. “Our medical center in Prosper was open, but I knew we did not offer continuous EEG monitoring at the time and would not be able to provide the appropriate services to be able to monitor and capture what was happening. Upon arriving in Fort Worth, Matthew was examined in the emergency department where he was ultimately admitted to our epilepsy monitoring unit.”

The new EEG monitoring service at Cook Children’s – Prosper is made possible through collaboration with the Neurosciences team in Fort Worth, an effort that began months before Greene and his family had their own emergency.

Patients experiencing a potential seizure are admitted to the inpatient unit at Cook Children’s – Prosper where an EEG technician sets up mobile monitoring equipment and attaches monitoring electrodes to the patient’s scalp. The test livestreams to clinicians in the Epilepsy Monitoring Unit at Cook Children’s Medical Center in Fort Worth for observation and reading. The monitoring process typically takes at least 24 hours and requires an overnight stay in the hospital.

“This is a relationship that we've been working on for multiple months with the Jane and John Justin Institute for Mind Health team in Fort Worth led by M. Scott Perry, M.D., head of Neurosciences and Cynthia Keator, M.D., Medical Director of Neurology,” Greene said. “It is another great example of how the children and families we care for at Cook Children’s – Prosper will have the full weight and expertise of the entire health care system behind them.”

Several obstacles were overcome to make this remote monitoring service a reality, including building the technological infrastructure to support high-speed and secure data-sharing channels between the two medical centers for real-time monitoring of the patient’s EEG patterns and events.

“We’ve been fortunate to have the support of our main campus while we grow and bring various systems online,” said neurologist Damian Campbell, D.O. of Cook Children’s – Prosper. “Their support has offered us an opportunity to really plan out our own approach here in Prosper. We’re excited to now be able to provide continuous EEG monitoring to our community; another step forward toward our promise of delivering the highest quality care to every child in our care and communities.”

Communication and collaboration protocols between the monitoring team in Fort Worth and clinical team members in Prosper were established to coordinate care activities, share essential information and maintain seamless operations during the monitoring process. 

“The project's success can be attributed to the dedication, expertise, and commitment of professionals from Cook Children's in Prosper and Fort Worth working together to achieve a common goal of providing the best possible care for patients,” said Rickey Ross, manager of the Neurodiagnostics Lab at Cook Children’s – Fort Worth. “Not only does this enhance access to specialized care and more timely interventions for kids in Prosper and the surrounding communities, but it offers convenience and comfort for patients and families, promotes knowledge sharing and optimizes resource utilization, all of which ultimately improve patient outcomes and well-being.”

Monitoring technicians in Fort Worth and nurses in Prosper underwent comprehensive training and education to prepare to support the service. 

“Our nurses and clinical care team members at Cook Children’s – Prosper are excited to be able to care for patient’s needing this critical service,” said Sheralyn Hartline, RN, assistant vice president of nursing and patient care at Cook Children’s – Prosper. “Through the collaboration with our medical team in Fort Worth, we are forever changing the way families are able to access world-class pediatric neurological services close to home.”

“Our family is truly grateful for the amazing care and kindness that was provided to our son during our time in Fort Worth,” Greene said. “It brings me great joy knowing we are now able to extend the same high-quality care and experience to our families seeking care at Cook Children’s Medical Center – Prosper.”

Every week, 7-year-old Landon Clayton gets an infusion of medicine that builds up his immunity to fight off infection. Nineteen-year-old Abigail Novak also receives a weekly infusion to strengthen her immune system.

Thanks to those infusions – called immunoglobin replacement therapy -- Landon’s and Abigail’s antibodies are now better equipped to protect them from the bacteria and viruses that made them frequently ill. They are among more than 800 patients seen at the Cook Children’s Immunology Clinic since it opened on July 27, 2021.

Naty Chaimowitz, M.D., Ph.D. runs the Immunology Clinic, which is celebrating its two-year anniversary today. It’s a center for the evaluation, diagnosis and treatment of rare and complex disorders in children from newborn to 20 years old.  The clinic works in partnership with the Cook Children’s Infectious Diseases Department. The goal? Increased awareness and access to care for those whose immune system does not function the way it should.

“I’d get sick with something and then it would take me a lot longer than most people to get over it,” Abigail said of her low antibody diagnosis. “When I did get over it, I’d have a little bit of relief, and then I’d get sick again.”

It was the same for Landon – he kept coming down with respiratory ailments that required antibiotics or steroids or even hospitalization.

“When we think about disorders of the immune system, there are mostly two ways patients present,” Dr. Chaimowitz said. “One of the ways is when you have a hole in your immune system that makes you more susceptible to infection. These are kids who are on antibiotics all the time, or they have more unusual infections or infections with things that normally don't make kids sick.”

The second broad category, called immune dysregulation, happens when the immune system misfires and attacks the body’s own cells instead of foreign invaders.

Referrals

Patients come to the clinic on referral from their primary care physician or from a specialist. For example, an Ear, Nose, Throat (ENT) doctor might refer a patient who continues to struggle with ear infections even after having tubes put in. Or a pulmonologist might refer a patient who keeps getting lung infections.

Additionally, the Texas Department of Health and Human Services refers infants whose newborn screening indicated Severe Combined Immunodeficiency (SCID), a potentially fatal condition.

The clinic also collaborates with the Cook Children’s Genetics team to establish or rule out any congenital causes for the patient’s symptoms.

Dr. Chaimowitz studies the patient’s health history and blood samples. Oftentimes she prescribes infusions or a regular dose of oral antibiotics to prevent infection. Extreme cases of immunodeficiency might require a bone marrow transplant.

Here's how subcutaneous (under the skin) infusions can help patients:

• Immunoglobin G (IgG) protein molecules are collected from the plasma of healthy blood donors. Those IgG antibodies are used to make the infusion medications.  
• A needle injects the medication into the tissue layer between skin and muscle.
• The boost of antibodies gives patients more energy and fewer sick days. Parents worry less about exposing their immune-compromised child to germs at school or elsewhere.

“Just coming and seeing us gives them hope,” Dr. Chaimowitz said. “I hear from a lot of parents that they know in their heart there's something different about their child. I say, ‘You came to the right place. I have hundreds of patients who share your story.’”

Abigail’s Experience

Abigail Novak has a kidney disease that requires her to take an immunosuppressant drug. During her teen years, it seemed like she was always dealing with health problems … flu, sinus infections, urinary tract infections, kidney stones, an abscessed cyst. If a contagious illness was making the rounds, Abigail caught it – and it took a long time to recover. In the fall semester of her freshman year in college, her fatigue and frequent bouts with illness got worse. Even a case of sniffles would escalate.   

“A cold would turn into almost pneumonia and bronchitis,” said her mom, Kristi Novak. “Anything she got was 10 times worse than a normal kid.”

Cook Children’s nephrologist Randa Razzouk, M.D. was Abigail’s kidney doctor at the time. Dr. Razzouk sent Abigail to the Immunology Clinic, where Dr. Chaimowitz diagnosed an antibody deficiency. Abigail started on infusion therapy in January 2023. From her dorm room at Texas Tech University in Lubbock, she would insert the needle and then study or watch a movie while the medicine entered her stomach tissue.

She saw improvement after about the third or fourth week of infusions.

“After a while, I started noticing, “Wow, I haven’t been sick!’ That was a big difference.”

With more energy to devote to her classes, the biochemistry major made the President’s Honor List in the spring semester.

She continues to visit with Dr. Chaimowitz every three months or so via virtual appointments, which means no need to commute from Lubbock or her family’s home in Seymour, almost a three-hour drive from Fort Worth.

Landon’s Experience

Landon Clayton was born with cystic fibrosis (CF), which affects the lungs, digestive system and other organs. From about age 3, he began getting sick more often than typical for people with CF.

“He kept getting sick, and it was horrible,” said mom Jessica Clayton. “He would have a good one or two weeks and then it would start again.”

His parents held him out of preschool because of the constant cycle of sickness.

“It was frustrating,” Jessica said. “My child shouldn’t be this sick and be on this many antibiotics and steroids. I know other CF kids, and this is not how they live.”

Landon came to Cook Children’s in 2022 under the care of Karen Schultz, M.D., medical director of Pulmonology Services. Dr. Schultz referred him to the Immunology Clinic, where Dr. Chaimowitz made a preliminary diagnosis of antibody deficiency.

Jessica remembers feeling a sense of relief and hope.

“That appointment was probably the best I ever felt after leaving a doctor’s appointment,” she said.  

The official diagnosis came about a month later when blood tests showed that Landon had barely any immune response to a recent pneumonia vaccine. He started infusion therapy in November.

Landon does his weekly infusion at home in Wichita Falls.  His mom starts by applying a cream to numb the outside of his thigh. Then she inserts a short needle and a pump delivers the drug that boosts Landon’s antibodies. The infusion takes about 50 minutes and he plays Mario Kart with his dad to pass the time.

Needles make him anxious, but his parents award him a small prize for cooperating with the process. “Not so bad,” he reports.

Jessica points out that Landon was sick so much that he missed 20 days of school in the fall of first grade. After starting the infusions, his only absences in the spring were two days out due to routine checkups. Now he has energy for his favorite hobbies: trampolines, Mario and dinosaurs.

“He’s like, ‘Mom, I can keep up with my friends now,’” Jessica said. “He can feel the difference.”

Resources and Reassurance

The Immunology Clinic provides education to patient families in an ongoing dialogue about treatment options. Dr. Chaimowitz applies her research skills to assess each patient’s unique situation against the array of more than 450 primary immune deficiency disorders. Periodic reassessment is needed, she said, because sometimes young children grow out of the condition as their immune system matures.

Dr. Chaimowitz says it’s rewarding to take even small steps that help strengthen a child’s weak immune system.

“Immune issues can present as frequent infections, severe infections or early-onset autoimmune disease,” she said. “And that when these things happen, you should at least think about the immune system.”

Patients picked out toys and created crafts, like Christmas cards and ornaments. They visited with St. Nick himself and Mrs. Claus.

At Cook Children's, we are grateful for the generosity of the community! Currently, we receive 70% of our annual in-kind donations in 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.

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

If you would like to assist, you can view the Christmas in July wish list: https://www.amazon.com/registries/gl/guest-view/2W1H6ULYM5O3L

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!

“I want them [kids] to grow up and study hard so that you can run our country and not just be the president. Be a senator. Show the courage," Lee said. "We need strong young people so hurry up and grow up.”

“Study hard and make sure that what you speak is positive because when you speak things you believe it,” Jackson said.

Ms. Opal Lee, known by many as the “Grandmother of Juneteenth,” began “Opal’s Walk 2 DC” in 2016 at age 89. She started with the plan to walk the 1,400 miles from Fort Worth, Texas to Washington, DC in hopes of gaining support from Congress to officially name Juneteenth a national holiday. In 2021, Juneteenth was named a federal holiday.

The National Juneteenth Museum in Fort Worth will be open to the public in June 2024.

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)

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

It’s amazing to see what one bright-colored toy or fidget can do to change the feeling in an exam room. Recently, I have started grabbing something to take to patients when I get a call to help prepare them for a procedure or support them.

Typically, I grab something small – a pop-it, a Hot Wheels car or something else that I can offer them upon entering the room. You can see kids’ eyes when you walk into the room. They are scanning your hands to see why you came and what you are there for. They are really looking for a SHOT!

When they scan my hands, they often see an iPad and some small toy or fidget of some kind, and their face melts a bit. They soften. Why does this happen? Because play is magical…

Play is the act of engaging in something for fun or enjoyment. We know that play is universal and crosses many cultural and language barriers. In fact, child life specialists would say that play can be a language of its own. Play is a pillar of child life practice, and we could not engage patients and families without it.

We see the expression of a child’s emotions and experiences being worked out in play often more than words. We also know that play is an integral part of cognitive, speech/language, social/emotional, and gross and fine motor development.

This makes play essential in a pediatric health care setting. It is our goal to continue the normal growth and development of children even during stressful experiences like hospitalizations, traumatic experiences and chronic illnesses.

There are several ways that we utilize play in the health care environment. We use play for normalizing the environment, preparing and teaching the patient and family about medical procedures, and for processing their experiences.

Normalizing the Hospital Experience

Developmentally appropriate play is the most natural aspect of childhood that kids know and understand. We use developmentally-appropriate play to help normalize what is otherwise a very stressful place. Just as I referenced in the story above, walking in with a toy or a stuffed animal immediately changes the atmosphere.

Basic things like coloring, Play-Doh and bubbles are the framework of breaking barriers with kids in this seemingly very scary place. You will notice in many exam rooms around the hospital and medical center that there are eye-spy art pictures for children to engage in while they wait.

Each age group plays differently and has different needs. When I would meet kids as an inpatient child life specialist, I would often ask kids what they loved to do if they were stuck in bed at their house. We want to start with their favorite things and what brings the most comfort. Thankfully, we are able to provide play opportunities to every kid that enters our doors in some way.

Through hospital allocations and community donations, play is always possible. I’ve played countless hours of Barbies and Battleship with kids. UNO tournaments were a norm in our inpatient playroom. Nerf guns and over the door basketball hoops can bring incredible laughter and smiles even on the worst of days.

Even in the NICU, our babies experience play. We make sure that babies have stimulation at the bedside with mobiles and textured lovies, and jumpers are provided as they are able.

Developmentally appropriate play is just a standard part of childhood. We want to meet the basic needs of children in the health care environment, too. Play is essential.

Processing - Therapeutic Play

While a large part of the play within the health care environment is just for fun, we also spend a lot of time playing with purpose. This is therapeutic play. Therapeutic play can be led by a patient (non-directive) or led by the child life specialist (directive) with the goal of emotional expression, medical teaching or to be physiologically enhancing (blowing bubbles to encourage deep breaths) (Koller).

Some could argue that all play is therapeutic allowing a child to express themselves and process their experiences. However, therapeutic play within the hospital environment is vital. These type of play experiences allow children to build their resilience while developing and practicing new coping skills. We utilize specific medical play often which is discussed in detail a little later.

We also provide art and music opportunities through our CARPE program and other play modalities for patients to express their feelings and work out their thoughts. Remembering that play is a language, we can learn a lot about our patients and families by watching them play or engaging in play with them. These things allow us to better serve our patients and families and develop care and coping plans during their stay.

Preparing for Procedures or Teaching a New Diagnosis

We also utilize play when preparing children for procedures or teaching them about a new diagnosis. This is a type of therapeutic play with a very specific purpose. We often utilize a stuffed animal or doll to first demonstrate a procedure. We may tie a tourniquet around a stuffed animal’s arm so that a child can see what that looks like. We frequently place IVs in dolls and stuffed animals so that the child feels less alone in their experiences while also seeing the steps and understanding the process.

As child life specialists, we facilitate what is called medical play. This may be as simple as a toy doctor’s kit to more complex play using real medical supplies while teaching with a patient and/or sibling.

One of my favorite activities is using an insulin syringe to inject dye into a medical play doll. This ultimately makes a tie-dyed doll, but it also allows a patient to get comfortable with the needle and syringe (under the supervision of a child life specialist).

At Cook Children’s, we host a Kid’s Clinic for patients to come down for a specific time just to do patient-led medical play. Patients are given a medical play doll and then are invited to use medical equipment on their doll. Patients place IVs, casts, and more.

This play often mimics their own experiences while giving them an opportunity to get more comfortable with medical equipment and process their feelings around their own story. Children not only learn from this type of play, but they leave feeling more empowered in their own medical care.

As child life specialists, play is not only essential but also at the forefront of every interaction with a patient and family. Cook Children’s recently lost a precious child life specialist. Amy Johnson was a child life specialist extraordinaire. As we were attending her funeral, many past patients’ families shared stories of Amy.

I was profoundly impacted that what the patients and parents remembered most fondly about Amy was her ability to PLAY – nerf gun wars, water gun fights and more! She had SO much fun during some of the worst moments, and this is the memory that the patients and families had ingrained in their hearts forever. Play is not only essential, but it also changes the environment and allows children to be the very best versions of themselves!

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.

Brothers Isaac Martinez, 7, and Jaden Alvarado, 13, are recovering at Cook Children's Medical Center after they were playing outside their home Wednesday afternoon when the tree above them was struck by lightning.

The lightning ricocheted and struck Jaden and Isaac, causing them to lose consciousness and collapse.

“It looked like fireworks were coming down the tree,” their mother Jessica Martinez Alvarado said. “I saw the boys lying on the ground when the fireworks stopped. ... I thought I had lost my boys. It's the worst feeling ever. I would never wish that on anyone.”

Isaac and Jaden were immediately rushed to Cook Children’s Medical Center Emergency Department. Doctors say that Jaden was primarily impacted by the lightning and likely suffered a cardiac arrest. The lighting ricocheted from Jaden to Isaac.

By Thursday morning, the boys were transferred to the Pediatric Intensive Care Unit, with their mother and family at their side as they rested and played video games.

Jessica said they were still processing what happened to them. The boys said they don't remember what had happened and they were feeling OK.

It wasn't raining when the boys were struck, Jessica said. She noticed the lightning was getting more intense and was about to tell the boys to go inside when the lightning struck the boys moments later.

“They're always outside playing. They love to play football or any kind of sports," she said. “Their favorite thing to do is play with their dog.”

Her advice to other parents: “Don't let their kids outside when it's thundering. I know it's a one-in-a-million chance, but you never know, you might be that one. It was two for me. Be very, very careful with your babies. Make sure you hug them and kiss them and hold them tight."

Taylor Louden, M.D., Medical Director, Pediatric Emergency Medicine at Cook Children’s Medical Center, said that parents should be cautious and keep their children indoors when there is a severe weather threat or thunder and lightning.

“The boys came in altered and confused," Louden said. "These boys are very lucky. We're glad everyone came out OK in this instance."

If someone is fatally struck by lightning, cardiac arrest is the immediate cause of death. Dr. Louden said it is crucial for a lightning strike victim to receive CPR as soon as possible or use an Automatic External Defibrillator (AED). Witnesses should call 911 immediately.

“Fortunately, lightning strikes are very rare, but we do have to be aware [of storms], especially in Texas where storms can come out of nowhere quickly," Dr. Louden said. "Even if storms are in the distance, you're still at risk.”

According to the Centers for Disease Control and Prevention, the odds of being struck by lightning in a given year are less than one in a million and almost 90% of all lightning strike victims survive.

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."

On Tuesday, Cook Children’s Health Care System celebrated the grand opening of a new space dedicated to the siblings of children with medically complex needs. It’s called the Panda Cares® Center of Hope Sibling Support Center and is located inside the newly expanded Dodson Specialty Clinics building at Cook Children’s Medical Center – Fort Worth.

The Panda Cares Center of Hope Sibling Support Center offers the siblings of Dodson Specialty Clinic patients a place to play, create and connect with other children whose families face similar challenges while their brother or sister attends clinic appointments. It also relieves the stress of parents and caregivers so they can concentrate on their child’s medical appointments knowing their other children have a safe and supportive space dedicated to their well-being, too.

The complex medical needs of a child with a chronic condition or life-changing injury can strain the mental and emotional health of the whole family, including brothers and sisters, according to Audra Trussell, coordinator of the Panda Cares Center of Hope Sibling Support Center.

“We are really focused on the sibling’s emotional and psychosocial care,” Trussell said. “A lot of times, they don’t need as much attention as their chronically ill brother or sister so they may feel a little left out and dragged around from appointment to appointment. At this center, we’re able to focus on those kids, give them the care they deserve as well, help them process their feelings and what they are experiencing, and make them feel like a member of the Cook Children’s family, too.”

The center is staffed by Trussell, who has a background in child development, and Judith Siharath, Panda Cares Center of Hope Sibling Support Center assistant, who has experience in psychology and child development. Cook Children’s volunteers will also be on hand to assist.

Everything for the Child

The Panda Cares Center of Hope Sibling Support Center is a therapeutic activity center full of everything for the child, from developmentally appropriate toys and sensory play items to arts and craft supplies. Each day Trussell and Siharath will offer child visitors a guided activity that sparks their imagination, creativity and conversation.

“Every day we'll have a different activity to do that will open up a new discussion for our sibling guests because, given their family’s situation, they might not get that opportunity outside of here, and we want to make sure they feel like they are the center of attention,” Siharath explained. “For example, we have an activity where kids can make a rainbow with colors based upon their feelings. We would ask them questions like, ‘What colors represent you?’ and ‘Which color represents your inside and outside feelings?’”

The questions are meant to help kids connect with other children who also have a sibling with a medical condition and may be experiencing similar emotions related to their brother or sister’s health.

“When we're all sitting around the table and these open-ended questions are being asked to help draw the child out and give them an opportunity to speak up, they'll get to hear other siblings say some things that they may not have felt like they could say out loud, and feelings that they’ve had regarding their sibling that is a patient,” Trussell said. “So that peer-to-peer support is an important piece that we want to emphasize here, too.”

Connecting the Dots for the Whole Family

Together with other Cook Children’s sibling support programs, The Panda Cares Center of Hope Sibling Support Center connects the dots of family-centered care at the health system. It’s an extension, Trussell says, of the work Child Life Services does to care for the mental and emotional health of the whole family through offerings like the Cook Children’s Sib2Sib Program™. Through weekend workshops, camps and family events, Sib2Sib gives patient siblings the opportunity to express themselves and their feelings, receive undivided adult attention, learn coping skills and connect with peers living in similar circumstances.

Sometimes a child will express fear or misunderstanding about their sibling’s health, treatment, or injury while visiting the Panda Cares Center of Hope Sibling Support Center or any of Cook Children’s sibling support programs. For example, if a child has experienced a pet being “put to sleep” they sometimes correlate that term with death, and may think their brother or sister is going to die because they are having a procedure where they will be put to sleep.

“When we hear those things we’ll be able to share that with their parents and connect all of them with a Child Life specialist that can help explain what the procedure is, what's really going to happen medically, and what all the terminology means in good, child-appropriate language that they understand,” Trussell said.

Together, all of these programs and services connect the dots of family-centered care at Cook Children’s.

The Panda Cares Center of Hope Sibling Support Center at Cook Children’s is made possible through the support of Panda Cares®, the philanthropic arm of the Asian dining concept Panda Express®, and its partnership with Children’s Miracle Network (CMN), of which Cook Children's is a member. Following a multimillion-dollar commitment to Children’s Miracle Network Hospitals to fund Panda Cares Centers of Hope, Panda and CMN Hospitals have debuted Center of Hope locations at several hospitals in the U.S. from California and Texas to Hawaii and Washington D.C.

The Panda Cares Center of Hope Sibling Support Center at Cook Children’s is open from 8 a.m. to 5 p.m. Monday through Friday to siblings, ages 3 to 11, of patients who have a clinic appointment. Children may attend the center for 90 minutes per visit. It is free to families. Reservations are not required but parents will be asked to complete a registration and consent form. 

Autism spectrum disorder (ASD) is a life-long neurodevelopmental disability characterized by communication and social skills deficits, in addition to restrictive and repetitive behavior. Recently, the Centers for Disease Control and Prevention updated their estimates, which now show that one out of every 36 children in the US has ASD. If your own family has not been directly impacted by ASD, chances are you know someone who has.

Autism impacts many different areas of an individual’s life, and Cook Children’s Child Study Center offers medical, psychological, behavioral, speech, and academic services to help address the unique needs of each individual child with ASD.

Perhaps the most fundamental skill affected by ASD is a child’s ability to communicate. Less than half of children with ASD will develop fluent speech by age 8, and approximately ¼ will remain nonverbal, relying on an alternative form of communication to interact with others.

Regardless of how your child speaks, you can help bolster their ability to communicate by focusing on four critical areas of language development.

What is CLEaR Speech?

Research on language development has identified four critical areas of communication that may require systematic intervention: Conversing, Labeling, Echoing, and Requesting (CLEaR). You can help your child develop CLEaR speech by practicing each of these language domains during their everyday play. For example, suppose your child enjoys playing with a toy train:

Conversing: Can they say the name of the toy when it is described? Ask your child to fill-in-the-blank using a description of a toy that they are not currently playing with. For example, say, “Choo, choo goes the ….”

Labeling: Can they say the name of the toy when it is present? Ask your child to say the name of the toy they are holding. For example, give the train to your child and ask, “What is that?”

Echoing: Can they say the name of the toy when you name it? Ask your child to repeat the name of a toy that they are not currently playing with. For example, say “Say, ‘Train.’”

Requesting: Can they say the name of the toy when it is absent? Ask your child to say the name of the toy they want to play with. For example, hide the train from your child and ask, “What do you want?”

Note that you have asked the child to say the word train four different times. It is the different contexts that make each word unique. Many children with ASD have some ability to label or echo, but struggle with conversing and requesting. Others may only speak when requesting preferred items. The goal of CLEaR speech is to help the child understand the different contexts in which a word can be used, and to gradually develop their language abilities in each area through a process called abstraction.

Abstracting CLEaR Speech

^[1] Mario is not a real child, but an amalgamation of different patients treated in Autism Services.

To demonstrate the process of abstraction, let me introduce you to Mario^[1], a 4-year-old boy receiving early intensive behavioral intervention through Child Study Center’s Autism Services department. Mario’s parents noticed his lack of eye contact early on, and had trouble engaging him when he was an infant. 

As a toddler, Mario did not respond to sounds (e.g., he did not look up when called by name), and his parents suspected hearing loss. They were surprised when he received an ASD diagnosis at age 3. Though Mario sporadically repeats phrases from his favorite TV shows, he lacks the ability to express his basic wants and needs. He may lead mom to the refrigerator when he is hungry, but often resorts to tantrums until his parents can guess what he wants. Mario’s parents use CLEaR speech to help him learn to request his favorite things. 

They begin by letting Mario choose what he is going to talk about, by simply allowing him to select a toy or snack. Whenever his interest shifts, they will direct his speech toward the new activity. Throughout his play, Mario’s parents alter the different environmental configurations that support Mario’s CLEaR speech. Mario picks up his toy car and rolls it down a ramp. His parents use the following sequence to help strengthen Mario’s ability to request by purposefully changing the non-critical details of requesting across each step:

CLEaR: After the car goes down the ramp, Mom picks it up. She shows it to Mario (labeling), and says, “Drive the car” (echoing), “Drive the …” (conversing). When Mario requests, “Car,” she enthusiastically repeats, “Car!” and hands it back to Mario so he can put it down the ramp again.

LER: After the car goes down the ramp, Dad picks it up. He shows it to Mario (labeling), and says, “Car.” (Echoing). When Mario requests, “Car,” he enthusiastically repeats, “Car!” and hands it back to Mario so he can put it down the ramp again. 

CLR: After the car goes down the ramp, Mom picks it up. She shows it to Mario (labeling), and says, “Drive the …” (conversing). When Mario requests, “Car,” she enthusiastically repeats, “Car!” and hands it back to Mario so he can put it down the ramp again.

CER: After the car goes down the ramp, Mom picks it up and hides it. She says, “Vroom, vroom goes the car” (echoing), “Drive the …” (conversing). When Mario requests, “Car,” she enthusiastically repeats, “Car!” and hands it back to Mario so he can put it down the ramp again.

LR: After the car goes down the ramp, Dad picks it up. He shows it to Mario (labeling). When Mario requests, “Car,” he enthusiastically repeats, “Car!” and hands it back to Mario so he can put it down the ramp again.

ER: After the car goes down the ramp, Mom picks it up and hides it. She says, “Car.’” (Echoing). When Mario requests, “Car,” she enthusiastically repeats, “Car!” and hands it back to Mario so he can put it down the ramp again.

CR: After the car goes down the ramp, Dad picks it up and hides it. He says, “Drive the …” (conversing). When Mario requests, “Car,” he enthusiastically repeats, “Car!” and hands it back to Mario so he can put it down the ramp again.

R: After the car goes down the ramp, Dad picks it up and hides it. When Mario requests, “Car,” he enthusiastically repeats, “Car!” and hands it back to Mario so he can put it down the ramp again.

The order of the steps is less important than the variation of supports across steps. Children with ASD may rely heavily on a particular aspect of their environment, like the presence of the toy. We can use that feature to help support their language development, while also helping the child become more responsive to changes in their environment. 

The presence of the toy is necessary for labeling, but it shouldn’t also be necessary for requesting. It may take repeated practice with one step before your child is ready to move onto the next. Similar abstractions can be arranged to strengthen conversing, labeling, and echoing skills. While language development comes naturally for many children, others require targeted intervention. If you have questions about your child’s language development or concerns that your child may have ASD, speak with your pediatrician and contact Early Childhood Intervention or your local public school to find out what services are available to your family.

The PrayerBears program at Cook Children’s is celebrating 25 years of giving spiritual and emotional support one cuddle at a time to patients admitted to the Medical Center. It’s a milestone birthday for a beloved aspect of our Spiritual Care department.

The Prayer Bear Program functions as an important link between our community, patient families, and our Spiritual Care department — a link not based upon religion, denomination, spirituality, or personal belief, but a link that names the sacredness of every single child who enters our care. Spiritual Care nurtures the spirit of Cook Children’s…and nothing better nurtures the spirit of a child, especially a child who is sick or injured, than receiving a PrayerBear.

Interfaith ministry specialist Robin “Mama Bear” Brazell and volunteers gave away 16,955 Prayer Bears in 2022. They are a source of encouragement to patients and families of every faith, including those with no ascribed faith. The gift of a Prayer Bear bridges cultural and religious differences, making another point of connection with the children we serve.

A Prayer Bear is often the first contact the Spiritual Care department makes with families. It opens the door for support from our chaplains if desired.

Funding for the Prayer Bear program comes from donors including faith communities, community groups and former patients who cherish their own PrayerBears so much that they want to make sure the 25-year Prayer Bear tradition continues for others.

Book: PrayerBear's Big Adventure

The book PrayerBear’s Big Adventure accompanies each PrayerBear and is an inclusive story that highlights the spiritual value of hope over any particular dogma.  This allows for patient families of every faith tradition and spiritual background to find value in the story while also highlighting other patient engagement opportunities like the Child Life Zone, Bomar Library, and the Erma Lowe Chapel.

For our Spanish-speaking patient families, we provide supplemental information about support services which, in turn, helps to break through potential barriers by affirming the worth of our Spanish-speaking population.

Placed inside each book is a prayer card that invites patient families to add their child’s name to a HIPAA-compliant prayer list that is distributed to hundreds of people and organizations each week.

The design of the book was specifically chosen with our Behavioral Health patients in mind, using materials that cannot be taken apart or used in acts of self-harm.

The combination of a patient family receiving a Prayer Bear and PrayerBear’s Big Adventure allows families to know the origin of the gift of their Prayer Bear, eliciting surprise, joy, and a sense of community.

The Prayer Ministry provides opportunities for patient families to share their burden which nourishes spirits and instills hope.

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)

Cook Children’s Medical Center has seen 30 infant deaths linked to unsafe sleep situations since January 2022, more than the number of fatal gunshot wounds and drownings combined.

That’s why safety advocates at Cook Children’s are sharing the risks that pillows, loose garments, blankets and other objects can pose in an infant’s sleeping environment.

The majority of unsafe sleep deaths in 2022 and so far in 2023 involved co-sleeping with at least one parent or caregiver, who awoke to find the child unresponsive. Trauma records at Cook Children’s list a variety of other circumstances too, including babies placed on a pillow with a propped bottle, in the crib with a blanket or pillow, in a recliner or on the couch next to a sleeping adult, or wearing a loose T-shirt that covered their face. By the time these infants arrived at the medical center, they were in cardiac arrest or respiratory failure.

Sharon Evans, trauma injury prevention coordinator, said the number of unsafe sleep deaths in the past 15 months is at the highest peak since she started in her role at Cook Children’s in 2008. Demographic data shows the group with the highest unsafe sleep deaths were Black boys from 2 months to 6 months old.

Infant deaths linked to unsafe sleep from 2022-2023

Candle Johnson, APRN, CPNP-PC at Cook Children’s Renaissance Neighborhood Clinic in south Fort Worth often talks about Safe Sleep with her patient families. As a Black nurse and Certified Pediatric Nurse Practitioner, it’s important to her that all patient families, including Black families, receive education and know that she is passionate about keeping their baby safe.

“Unless it hits home, it doesn’t really resonate. We want them to understand this is a very preventable situation,” Johnson said. “Let’s be proactive today, so we don’t have to be reactive tomorrow. If a fatality happens, then how do we go forward when we could have prevented it from the beginning?”

Sometimes patient families share with Johnson that co-sleeping is a generational habit and give her pushback. While those conversations can be tough, Johnson knows it’s important to break through those misconceptions. She shares why it’s important that the baby sleeps separately on a flat surface, like a crib or bassinet.

“It seems to be so much easier to co-sleep when breastfeeding,” Johnson said. “I do advise against that because even though it may be easier, it’s not safe. No one can control their body function once they’re sleeping. When you’re in a deep sleep and your infant is next to you, you’re not able to say ‘I won’t roll over on them.’”

An infant can get wedged between the headboard and mattress, suffocate under blankets, or come under the adult’s body if they’re sleeping together, Johnson said.

She discussed barriers that could increase the risk of an infant being fatally injured from unsafe sleep situations. Those challenges might include a lack of education about safe sleep, distrust of medical advice, young maternal age, and inability to afford a separate crib or bassinet, Johnson said. In a crowded one-bedroom residence, she said, everyone in the household might sleep in one bed due to space constraints.

Data from Cook Children’s on unsafe sleep deaths in 2022-2023 show that the infants were in sleeping positions or circumstances that contributed to their deaths, not to be misidentified as SUID, sudden unexpected infant death. SUID describes the sudden and unexpected death of a baby in which the cause was not obvious; SUID cases are not all preventable. 

According to the U.S. Centers for Disease Control and Prevention (CDC), about 3,500 sleep-related infant deaths occur each year in the United States.

When it comes to sleep risks, the message is just as critical as the safety rules for other potential hazards such as swimming pools and riding in a vehicle. Parents know to buckle their children into lifejackets and car seats. Safe sleep also involves precautions:

• Always place your baby on their back to sleep. Side and stomach sleeping are not safe for infants who can't roll over.
• Use a firm, flat mattress or sleeping surface with tightly-fitted sheets. The surface shouldn’t be sloped.
• Share a room but not a bed with your baby. Babies should sleep in their own cribs or bassinet.
• Clear your baby’s sleep area of blankets, pillows, bumper pads and soft toys.
• Sleep sacks are recommended instead of swaddling, especially after your baby is able to roll over. 

Parents want to do their best, but they’re often exhausted by midnight feedings and other aspects of caring for an infant, Evans pointed out. They might decide impulsively to lie down beside their sleeping baby in an adult bed for just a few minutes, leading to a tragic outcome.

“Nobody intentionally does it,” she said. “I don’t think any of the parents who are co-sleeping feel like there’s any danger.”

Evans encourages parents and caregivers to consistently follow the evidence-based guidelines for safe sleep. Even if the baby’s fussy. Even if co-sleeping makes it easier to breastfeed. Even if you grew up co-sleeping as the family norm, put the baby in a crib or bassinet every night and for every nap.

Daniel Guzman, M.D. treats patients in the Cook Children’s Emergency Department (ED). It’s particularly heartbreaking to see infants needing emergency care for injuries that happened while they slept, he said. “You always hear ‘I never thought it was going to happen to me.’ The amount of pain that you see these families go through is just horrific. It hurts me every single time.”  

Dr. Guzman, who is a father of three, empathizes with moms and dads who are worn out by the demands of parenting an infant. He starts conversations whenever he hears parents in the ED report they sleep in the same bed as their baby. “I’m quick to say, ‘Let’s talk about this. What can we do to make you guys safer?’”

The Safe Baby Sleep Council, led by Cook Children’s helps provide sleep sacks and pack-and-plays to families. Reducing the number of unsafe sleep deaths will require greater public awareness plus resources, Dr. Guzman said.

“Cook Children’s is here to make that difference and provide not only the education and the information, but the tools that make us safer,” he said. “If we get one person to hear the message and have a shift in their mindset, we’ve already done our job. But we want to do more and we’re going to continue to do more.” 

Anu Partap, M.D., M.P.H., Physician Director of Health Equity at Cook Children's, said many dynamics factor into sleep-associated infant deaths, including financial hardship and housing arrangements. Input from community leaders is key, Dr. Partap said.

“We need to engage the communities who are losing their babies at higher rates and work with them to figure out what we can do to stop loss of life. Communities who are affected are our partners in protecting their children,” she said. “Learn from them and share with them what we know. We have to work together to solve this and we can.”

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)

By Baylee Simmons, CCLS, Child Life Specialist at Cook Children’s Neonatal Intensive Care Unit

A child life specialist is commonly known as someone who can help a child understand and cope with his or her hospitalization, diagnosis or medical experience.

That being said, I am often asked what role a child life specialist plays in the Cook Children's Neonatal Intensive Care Unit (NICU) where patients are far too young to talk, comprehend preparation for procedures, diagnosis education or participate in play and therapeutic activities typically provided by child life. 

Great question! Child life in the NICU looks very different than in other areas of the hospital. Still, our goal is the same -- to provide support and interventions that promote emotional safety, improve patients' and families’ ability to cope, and reduce the negative effects of unavoidable stress and trauma they endure.

Stress and coping in the NICU

When an infant is born prematurely or with medical needs leading to a NICU admission, the whole family is affected. Most parents expect to take their baby home to a quiet, calm environment where they can heal, bond with this new baby and begin adjusting to life with a new member of their family.

A NICU admission can turn all of those expectations upside down. For the first few days, the mother is often still admitted to another hospital, the delivery hospital. While this is necessary for moms to heal and recover, it creates a lot of stress for the family. The baby’s father and/or other family members have to navigate where to spend their time, who will care for any children at home and so much more.

Patients admit to the NICU for many, many different reasons and these admissions range from a few days to many months depending on the severity of their condition and medical needs. Over the course of a patient’s admission, the stress may change but continues to bring new challenges.

Some parents grieve their first days or months with this baby not looking how they thought, some struggle to feel connected with their baby amidst the restrictions and treatments needed to grow or heal, or wonder how to support, explain things to and include the baby’s siblings without overwhelming them.

Other families find themselves unable to understand/process their baby’s diagnosis and care, juggling time between work and the hospital to maintain income, or processing a tragic situation where their baby might die and making decisions about how to honor their child’s memory or explain that to their siblings. All of that stress impacts a family’s ability to cope with the hospitalization and ultimately provide a secure, nurturing environment for their baby, which plays a critical role in their development and health.

Child Life in the NICU

As a NICU child life specialist, I can often be found hanging a name banner in a new patient’s room, making ink prints of tiny feet or seated on the couch next to an overwhelmed parent listening to whatever troubles their mind that day. These are a few ways I begin getting to know a family, what is meaningful to them, and what individual stressors or challenges they bring to the NICU experience.

This careful assessment allows me to identify what support, education or therapeutic intervention they might benefit from on any given day. I strive to give families the tools they need to be successful in the NICU environment and overcome the stress they inevitably encounter here. That could be using my knowledge of child development to help validate or explain why their 4-year-old daughter is regressing and acting out uncharacteristically or offering a more simplified explanation of new medical equipment being used on their baby using a teaching doll or other resources to strengthen the family and siblings’ understanding. 

I make ink prints or take photos of big moments and milestones babies meet to help encourage their parents and foster that connection throughout their stay. We celebrate holidays and “firsts” throughout the unit to bring a little bit of joy or normalcy into a place where most families feel that they are missing them. And on the darkest days when families are told their baby will not be coming home with them, I offer bereavement support and the opportunity for families to choose how they will honor and memorialize their child’s last moments of life.

Child Life exists in the NICU to support the WHOLE family so that they can better care for and support their baby both in our unit and as they transition home.

Cook Children’s Medical Center turned 105 years old on Tuesday, March 21, and to celebrate we threw a party featuring food, music, games and entertainment. 

Guests and patient families were invited to join us for lawn activities including coloring stations, cornhole, giant Connect 4, caricature and glitter tattoo artists and a mobile Build-A-Bear unit. As a giant birthday cake was projected onto the front of the medical center, recording artist Abraham Alexander helped us sing happy birthday! 

After the sun set, we recreated a moment of magic which started at our centennial and will be a part of our birthday celebration for years to come: Good Night Lights. With help from members of the Fort Worth Police Department and Fort Worth Fire Department, we wished goodnight to the patients in the medical center by flashing lights and flashlights up to the windows. 

Click here to watch a livestream of the event.

Milestones and Growth

Cook Children’s has been caring for families in North Texas and beyond since 1918.

Since the start of our centennial, we have hit major milestones and experienced major growth while still maintaining what is of the utmost importance – our promise, “Everything for the child.”

In late 2018 our Neonatal Intensive Care Unit (NICU) at Cook Children's Medical Center was the first NICU in North Texas to be recognized as a Level IV center, meaning we provide the highest level of neonatal care to critically ill infants.

In 2019 we expanded further to the west with our new urgent care and orthopedic location at Walsh Ranch.

In 2020 while navigating a pandemic we:

• Were verified as a Level I Children's Surgery Center. This verification is a first for North Texas and makes Cook Children's one of the few hospitals in the State of Texas to hold this distinction.
• We also became the first freestanding children's hospital in the world to receive full accreditation through the Society for Simulation in Healthcare (SSH), which aims to enhance the quality of health care through simulation education.
• Earned the 2020 Leapfrog Top Hospital Award. This highlighted its nationally recognized achievements in patient safety and quality, Cook Children's Medical Center was named a Top Children's Hospital nationally by The Leapfrog Group. Announced today, the Leapfrog Top Hospital award is widely acknowledged as one of the most competitive awards American hospitals can receive.

In 2021 Cook Children's Medical Center achieved its fourth consecutive Magnet® designation, making us one of only 10 freestanding children's hospitals in the world to receive this prestigious recognition four times in a row. 

We received alongside 33 hospitals in the world the Emergency Department received coveted Lantern Award from the Emergency Nurses Association (ENA). The group recognized Cook Children's Emergency Department (ED) for demonstrating exceptional and innovative performance through leadership, practices, education, advocacy and research.

We were proud to announce that our Hyperinsulinism Center is now one of six Hyperinsulinism Centers of Excellence in the world.

In 2022 we joined a partnership to enhance Neonatal care in west Texas, successfully achieved six rankings in the U.S. News and World Report’s Best Children’s Hospital list, and opened an entirely new medical center campus in Prosper.

So far in 2023 we have had two major accomplishments. We performed our first-ever conjoined twin separation and due to groundbreaking research at our neurosciences research center,  we have been able precisely identify which part of the brain is causing seizures in children with epilepsy.

For 105 years and the next, Cook Children’s is committed to excellence and doing what is best for every child, every time.

Caption: Top: The original Free Baby Hospital; Bottom left: Ida Turner; Bottom right: Matilda Nail Cook

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

Family-centered care is a pillar of Child Life Services and holds high value within our Cook Children’s system. We must consider each person in a patient’s family.  The idea of family systems theory is that when one person is affected by a circumstance, the whole family is affected. Everyone feels the experience in some way.

Recently, my family had the opportunity to receive services from an organization that serves patients and families with ongoing health care needs. This organization sends a box each month for a year to the patient, but they also include items for the patient’s parents and siblings. The first box we received had T-shirts for all of us with individualized cards and small gifts. My girls each received an envelope from this organization full of Valentines from lots of people.

This organization connected us with another organization that provides birthday cakes for patients and their siblings. Each of my daughters received the most stunning cakes donated by local bakeries for their recent birthdays. Both of these organizations encompass the true meaning of family-centered care, by caring for the whole family.  

Child Life Specialists focus their care not only on the patients that we serve each day but also on the other children in their families. It may be siblings, cousins, best friends, or others. Whoever may be impacted by the experience of the patient should also be cared for and receive services. Often, Child Life Specialists will provide the assessment, preparation, support, education and play for siblings and other children within a patient’s support system.

The emotional safety of the whole family matters. We want to consider where each person finds themselves during the current experience. Family dynamics, past medical experiences and traumatic experiences, the family’s beliefs and more help child life specialists provide the best services to each family member. While the patient may be coping very well with their current circumstance, it is possible that a sibling or parent is having a very difficult time and their needs may be different than that of the patient.

Years ago, my youngest daughter was admitted to the NICU following her birth. At the time I had a 2-year-old and a 4-year-old at home. My oldest was allowed to come up and visit, meet and hold her newest sister, but my middle daughter was too young for the visitor guidelines in the NICU. We did everything we could to make that time better for everyone. The girls would come to the hospital and eat meals with me while I stayed at the hospital. We frequented Build-A-Bear and made the most of the indoor and outdoor playground.

When one family member has a medical crisis, the rest of the family juggles to handle it all. My middle daughter really struggled because, at the time, she was almost fully potty-trained, but this time caused her to regress.  She was so ready to meet her sister and have her mom back at home. She melted down at every good-bye and every greeting. This is the perfect circumstance for Child Life Specialists to help create some bridges for the family. We took pictures and shared them with her and told her exactly what her sister was experiencing. She drew pictures for her baby sister and helped build her a bear at Build-A-Bear. Each thing that we did, helped us acknowledge that she was a part of this family unit even when we couldn’t all be together.

Supporting caregivers, parents and siblings

In addition to the patient, we want to provide preparation and support to the caregivers and siblings of each family as well. We want everyone to understand the steps and reasons for the medical care we are providing. When the patient is getting an IV, it is important for the sibling observing to also know what is happening and receive some preparation and support around this procedure. When a family member visits the ICU for the first time, it is helpful for child life to prepare them for what they will see and hear in the unit.

It is also important for caregivers and siblings to be educated about new diagnoses and understand at the same level as the patient. Child Life Specialists can provide medical play and education to siblings or close family of a patient. Child Life Specialists can include siblings in debriefings of traumatic experiences and often in bereavement situations while helping them process what they may be feeling and experiencing.

We also want to provide normalization to the family as a unit, such as utilizing volunteer services while a caregiver attends a sports function for a sibling. We also provide developmentally appropriate play for siblings while they are visiting to make sure that activities are available not only to patients but to their siblings and families as well.

At Cook Children’s, we strive to provide family-centered care in all areas of the medical center. From sibling support groups to camps to parent mentors. We also have several ways that we support families and siblings.

Family Centered Care programs and resources at Cook Children's

 Family Centered Care at Cook Children's provides many programs, including the Parent Mentor Program, the Family Resource Library and our Parents as Partners program.

Our parent mentor program provides visits and phone calls to inpatient parents and caregivers to offer support and fellowship. Our Parents as Partners program includes our Family Advisory Councils that you will find throughout the medical center in different areas and departments. Involved families can help guide and direct our initiatives utilizing their own experiences. Parent support groups are also returning post-COVID. Cook Children's also has a new initiative for self-care for families.

We also have a whole program for siblings called Sib2Sib created by Child Life Specialists. This program provides so many opportunities for siblings and they are currently working on creating a website just for siblings. We have resources that include a sibling tour of the hospital led by Brie and Steve, two of our facility dogs. We also have information available for developmentally-based sibling needs. There is also the upcoming opening of a Sibling Support Center dedicated solely to the siblings that we serve every day. For questions about sibling services, you can contact Sib2Sib at sibprogram@cookchildrens.org.

Child Life Specialists advocate and strive to ensure the emotional safety of the entire family unit. These experiences touch each person in some way, and it is important to acknowledge each individual’s needs as well as the needs of the family unit. Cook Children’s is dedicated to providing family-centered care in every situation.