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

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

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

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

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

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

The Grinch stopped by on Wednesday with lots of laughs to share and stories to tell. Our hearts grew three sizes! 

At our annual Christmas party on Thursday morning, patients and their families were invited to meet Santa and Mrs. Claus, participate in arts and crafts and pick out a stuffed stocking with special gifts! 

Santa also made time to visit the Prosper Medical Center! Patients enjoyed decorating trees, painting snowflakes, and picking out toys on Thursday morning. 

Everyone enjoyed celebrating at the Christmas parties!

There were no major concerns until after birth when Mason’s pediatrician noticed his limb length was still a little shorter than normal. When Mason was one day old, the Hendersons were advised to do genetic testing.

They made an appointment with Candace Gamble, M.D. at Cook Children’s Genetics.

“Dr. Gamble was an answered prayer,” Whitney said. “She has been so patient with us and gone above and beyond to share information, answer questions and do virtual appointments since we are two hours away.”

Diagnosed with Diastrophic Dysplasia

“One of the difficult things about a rare disorder is the uncharted territory it creates, not only for the patient and family, but also for the medical team,” Dr. Gamble said. “At Cook Children’s Genetics our physician lead team has expertise and training in recognition of rare disorders that shortens the diagnostic odyssey for our patients.”

Mason was diagnosed with diastrophic dysplasia (DTD), a type of skeletal dysplasia and a rare genetic disorder that affects cartilage and bone development in the hands, face, ears, feet, hips, legs and spine. Skeletal dysplasia can also cause dwarfism, where people are shorter in height, 4 ft. 10 in. or less on average.

“Initially, when Mason presented his condition, it was not thought to be a skeletal disorder, but he had one distinctive clinical feature that I recognized which made the diagnosis clear to me,” Dr. Gamble said. “Also, after testing is complete, our team’s experience in gene variant interpretation and resolution allows us to confirm a diagnosis faster, which is exactly what happened in Mason’s case.”

Finding Your Tribe

Fast forward to today. Mason is 3 years old and despite the challenges, has shown incredible resilience. Whitney has connected with other families online in the skeletal dysplasia community, and with variants of DTD and recessive multiple epiphyseal dysplasia (rMED).

While they haven’t found anyone with Mason’s exact gene combination or “mild” gene expression, Whitney and her husband have found solace and encouragement in the shared experiences.

“Although it can be a bit isolating because Mason doesn’t fit the standard DTD mold, seeing others be so successful in life has been encouraging us as parents to know we aren’t alone,” Whitney said.

A Team Effort for Advocacy and Awareness

Living with a rare disorder can be challenging for anyone. Like neurological disorders including autism and epilepsy, skeletal dysplasia can also be seen on a “spectrum” where some people need more medical intervention than others.

Learning about different types of skeletal dysplasia while encouraging her son to be independent has been helpful for Whitney’s family. She also recommends standing up for your child.

“I never anticipated questions and comments from strangers on Mason’s size so it pushed us to learn saying things like: ‘Kids come in all sorts of shapes and sizes!’ and ‘You are so mature.’ instead of ‘You are so big,’” Whitney said. “Changing how we speak to him and others to make it about maturity rather than size really helps. I also encourage other parents to always advocate for your kids. Only you know your kids!”

Whitney’s Passion Project: A Storybook Inspiration

Inspired by Mason’s strength and a little stuffed lion, Whitney wrote a children’s book, Little Lion, so brave and strong, to celebrate the unique qualities of children with disabilities and encourages a message of belonging.

“When Mason was a baby, his great-grandma got him a stuffed lion. He loved that lion and clung to it,” Whitney said. “Each night before bed I started telling him ‘You are strong. You are brave. Like a lion!’ and we still say it together every night.”

As time went by, Whitney wondered if her routine with Mason could be something helpful for other parents and children.

“I’m not a writer, my day job is in cybersecurity so this was out of my comfort zone, but God kept nudging me to pursue it,” she said. “I told my husband and he supported the idea. Over the course of a year, we came up with ideas, researched publishing, found an illustrator and eventually self-published online.”

Whitney didn’t care if the book ever became popular, but her hope was for Mason to know that he always belongs and to pass the message to other kids.

“My favorite line from the book is ‘Little lion, so brave and strong, always know that you belong,’” Whitney said. 

Dr. Gamble was also happy Whitney published a book to tell Mason’s story.

“I’m thrilled that Mrs. Henderson is a champion for Mason in writing this book and telling his story,” Dr. Gamble said. “It has been a joy to help Mason and his parents navigate this rare condition. I hope to be an advocate for them along Mason’s journey now and into the future. Our goal is to ensure that he thrives in spite of his challenges.”

This innovative series explores the fascinating connection between art, science, and creativity. The first episode, now streaming on PBS.org, dives into the work we're doing with Spikelangelo, the painting robot that helps children with epilepsy heal and recover through artistic expression.

“Confluence explores the enduring--and often surprising connections between three of the most essential aspects of the human experience: art, science, and creativity. A range of stories are told by a terrific array of characters, some well-known and others will be wonderful discoveries for audiences.”

Tune in to see the power of art and science coming together to make a difference in the lives of our patients!

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

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

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

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!

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

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

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

On January 25, Cook Children’s Neonatal Intensive Care Unit hit its highest patient volume with 101 babies. Brittany McLaughlin, NICU Director, says this milestone is evidence of the continued growth in our community and its impact on our hospital. 

“We are so very grateful to have the unit and resources to care for the infants in the community that need our support,” said McLaughlin. “We wish our services were not needed but we are thankful that we are here to provide for these infants and their families.”

Cook Children’s NICU has 99 private rooms and is the only one in Tarrant County that offers single-patient rooms. With roughly 450 employees, the department is the size of a small hospital in itself.

Support NICU Patients and Families

The milestone coincides with one of the biggest fundraisers supporting Cook Children’s NICU. On Wednesday, January 31, the legendary Fort Worth Stock Show and Rodeo will donate half of all proceeds from tickets to Cook Children’s NICU.

Stock Show and Rodeo President, Brad Barnes, is proud to be a continuous source of support for Cook Children’s.

“The joy that comes with knowing the children at Cook Children’s will benefit from this special rodeo performance is immeasurable,” he said. “Of all the projects we’re involved with in this wonderful city, hosting Cook Children’s Day stands out among them all. We look forward to seeing Dickies Arena packed for this wonderful event.”

Brittany says if you live in Fort Worth and have never been to the rodeo, now’s the time.

“It's so much fun, and the fact that this night also directly impacts our tiny patients is just the icing on the cake,” she said.

Treasured Partners

The love and support given to the Cook Children’s NICU does not go unnoticed by the staff.

“I can’t express how blessed I feel every day to be able to come to work and have all the resources we need,” says McLaughlin. “It helps us as a staff to focus on what really matters and take better care of our tiny patients.” 

“As the only Level IV NICU in Tarrant County, we provide the highest level of care available to the sickest babies in our communities,” said Grant Harris, Chief Development Officer of Cook Children’s Health Foundation. “We hope families never need to visit our NICU, but if they do, partners like the Fort Worth Stock Show & Rodeo help make it possible for their babies to receive world-class care right here in Fort Worth.”

Purchase tickets for Cook Children’s Day at the Rodeo here. Can’t make it to the event? Support Cook Children’s NICU families by making a donation here.

The Grinch stopped by on Monday with lots of laughs to share and stories to tell. Our hearts grew three sizes! 

Santa and Mrs. Claus delivered presents, arts and crafts, and sweet treats to the Fort Worth Medical Center on Tuesday morning. Many patients also received a bike and a helmet graciously donated by Bikes For Angels. 

Santa also made time to visit the Prosper Medical Center! Patients enjoyed decorating trees, painting snowflakes, and picking out toys on Wednesday morning. 

Everyone enjoyed celebrating at the Christmas parties!

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.”

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

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.

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

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. 

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.”

“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?

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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

“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.

Best Children’s Hospitals list for 2023-2024.

The report, which was released today, uses clinical data to measure patient safety, infection prevention and adequacy of nurse staffing. Out of 284 children’s hospitals in the U.S., only 90 ranked in at least one of the 10 pediatric specialties evaluated. The following Cook Children’s specialties were named among the top programs:

• Pediatric Cancer - #30 in the nation
• Pediatric Diabetes and Endocrinology - #31 in the nation
• Pediatric Neurology and Neurosurgery - #36 in the nation
• Pediatric Orthopedics - #40 in the nation
• Pediatric Pulmonology and Lung Surgery - #48 in the nation

Cook Children's Hematology and Oncology program jumped an impressive 20 spots in the rankings, from #50 in 2022-2023 to #30 in 2023-2024.

 “We are focused every day to improve the lives of the patients we serve and enrich the care of children all over the world. We do this by providing innovative care and contributing to the science of future cancer therapies,” said Donald Beam, M.D., medical director of Hematology and Oncology. “We will continue to strive to improve every day, growing beyond what we are and stepping to the future.”

For Cook Children's Health Care System as a whole, the rankings demonstrate a longstanding commitment to excellence in pediatric care.  

"For more than 105 years, Cook Children's has been committed to improving the well-being of every child in our care. We are honored to see our mission validated yet again by U.S. News and World Report,” said Rick W. Merrill, President and CEO of Cook Children’s Health Care System. “With our newest medical center in Prosper now open, we look forward to making an impact in the lives of even more children and families.” 

Cook Children’s also ranked #3 in Texas and #4 in the Southwest on the U.S. News and World Report “Best Regional Hospitals” list. 

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!”

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

From Reporter Kevin Reece:

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

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

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

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

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

José L. Iglesias, M.D., FACS, Medical Director of Pediatric Surgery at Cook Children’s Medical Center, who was the lead surgeon during Cook Children's first separation of conjoined twins, was featured on the cover - “Inside Cook Children's Miraculous Separation of Conjoined Twins.”

Dr. Iglesias, Ben Gbulie, M.D., plastic surgeon; Chandra Reynolds, M.D., lead anesthesiologist; Marty Knott, D.O., primary surgeon; Mary Fran Lynch, M.D., neonatologist; and Chad Barber, M.D., neonatologist were featured in the nine-page spread. This issue is available on newsstands now.

Fort Worth Magazine: “It’s rare as it is, being born as conjoined twins. And to survive as long as they have, even rarer. But to separate via a historic procedure at Cook Children’s Medical Center makes the lives of AmieLynn and JamieLynn Finley a miracle.”

Read the full story here.

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)

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.

The newly constructed expansion to the Dodson Specialty Clinics opens its doors Monday, March 20. This 240,000-square-foot expansion adds more space for patient families and providers and brings six additional specialties together under one roof.

On March 20, the Dodson Surgery Center, Dodson Central Registration and Dodson Sterile Processing will move. Periodically through June, other specialty clinics will move to new locations in Dodson Specialty Clinics.

When patient families walk through the doors of the newly expanded Dodson Specialty Clinics, Stan Davis, Chief Operating Officer of Cook Children’s Medical Center, hopes they feel valued.

“Most of the patients who come here have repeating needs and we are building a lifelong relationship with them and their families,” Davis said.  “After many focus groups to understand our patient families’ desires and needs for this space, I hope they feel that we heard them.”

Cindi Coker who has been visiting Cook Children’s for 20 years, already feels heard. Cindi’s son, Clayton, has complex medical needs so she knows firsthand the features that make visits to the hospital easier for patient families. From working with Security on the handicapped parking layout to advocating for a café and companion care restrooms for the older kids, Cindi has provided invaluable input.  

“It speaks volumes that Cook Children’s is taking the patient experience to the next level,” Cindi said. “It means a lot to us.”

Veronica Tolley, vice president of Primary and Specialty Services at Cook Children’s, is looking forward to watching the patient families enjoy the new features. “The feedback we’ve heard for years is coming to life and will be evident in their experience,” Tolley said. 

All Services Under One Roof

A lack of space for new practices on campus matched with the exponential growth of physicians, teams and patients led to the vision of the expanded Dodson Specialty Clinics.

“Many subspecialty groups came into existence after the original Dodson space was built,” Tolley said. “This building is a testament to not only adding new services but every existing service growing.”

Now all services will be under one roof – a welcome improvement for many patient families such as those who visit Urology. Instead of having to park twice and walk across an intersection in one day, families will now access Urology and Radiology in the same building. 

Spencer Seals, vice president of Construction, Real Estate and Facility Planning, has been involved with every aspect of planning since its inception. 

“There is nothing more frustrating to a patient family than to go different places for services,” Seals said. “That is the reality for the vast majority of our families and now with a consolidation of clinics in a hub, they will have everything they need.”

Not only were patient families surveyed but employees, too. A survey of staff asked them about top priorities which resulted in features such as food options and access to natural light.

Seeing the Building Through a Patient’s Eyes

Kim Arnold, space utilization and transition manager, led the team that collaborated with Patient Family Services to simulate the patient experience throughout Dodson Specialty Clinics from beginning to end. Patient families walked into the building and interacted with staff just as they would on a typical visit.

“The transition and patient simulations are focused on getting in front of and being prepared for change,” Arnold said. “Executing over 90 simulations helped us understand what it feels like to navigate this new building through a patient family’s eyes. We are transitioning existing and new clinics and services each week within the Dodson footprint. This is a steady change and staff is working diligently to be ready. Their involvement in the simulations was essential for success.” 

The unique features of Dodson will include highlights such as a state-of-the-art parking garage with an advanced guidance system and many upgrades; Peaks Tech Zone where patients and families will learn how to use new medical equipment and sync their Cook Children’s apps; the Dodson Pharmacy for families to pick up prescriptions and staff members to purchase over the counter medications; an outpatient lab conveniently located on the first floor; Jane and John Justin Institute for Mind Health at Cook Children’s Medical Center – Fort Worth involving nine brain-related specialties on one floor and a Complex Care Clinic. Companion care restrooms are also available in the common areas on every floor. It doesn’t stop there. Extra space has been allocated for future programs.

“Our desire is that patients don’t have to go elsewhere to get care,” Davis said. “We are already planning for future growth.”

Not Just Another Building

For Seals who has three kids of his own, making the hospital experience an enjoyable one has always been top of mind.

“How the kids and families feel permeates everything we do,” Seals said. “I hope they see the fun in all of it and feel that the care is second to none. World-class care starts with world-class spaces and it’s my job to connect those by giving our employees the right type of space and tools to do what they do best.”

All of the child-friendly features throughout the building help kids to engage and decrease stress and anxiety. Spencer said as kids are more comfortable, parents feel that way too and it creates a better healing environment.

Stephanie Tunell couldn’t agree more. Two of her children are patients at Cook Children’s and her youngest who was born with Hypoplastic Left Heart Syndrome and a variant of DiGeorge Syndrome visits 10 different clinics.

“The new building is so bright and whimsical,” Tunell said. “I know children will be excited to experience the castle atmosphere and find all of the hidden gems as they journey through the building.”

“The new space is a reflection of our Promise – everything for the child,” Davis said. “It’s not about another building; it’s about being there for the children.”

A Champion for Children

The Dodson Specialty Clinics Expansion would not be possible without Clarabele “Pit” Dodson and her late husband T.L. Dodson Jr. whose generous gift built the original Dodson building. Pit learned the art of giving from her parents, who instilled in her the importance of taking care of others from an early age. 

A 1989 tour of Cook Children’s ignited the couple’s passion for the health care system. Together they began pouring their time, love and generosity into the organization. 

“When you think about the generosity of Pit Dodson, you have to think about all the kids she’s helped up to this point but also the generations of kids in the future,” Stan Davis said. “Yes, Pit has given us so much through her generous donations, but just as importantly Pit has given us her time and her heart. She’s a part of Cook Children’s that will last forever.”

RELATED: How One Woman's Generosity to Cook Children's Has Shaped Health Care for North Texas

• Thistle the porcupine
• Nigel the Brazilian spectacled owl
• Laguna the American alligator
• Zuri the African grey parrot

Three little girls’ lives were changed when Save a Smile provided more than $11,000 in dental care to restore their smiles. Britani, Skarli and Ashley Ortiz were in so much pain from dental decay that they frequently went to the nurse’s office at school to ask for ice packs. The Save a Smile program at their school identified the Ortiz sisters because each girl had multiple abscesses and was in emergent need of dental care.

Save a Smile, which started in 2003, is in 21 elementary schools in Hurst-Euless-Bedford, Fort Worth and Keller ISDs. Save a Smile provides dental screenings at schools and identifies children who are in emergent need or pain. Save a Smile has provided over $10 million in dentistry to children in the community.

Depending on the severity of the problem, the age of the child, translation requirements and financial/insurance status, a referral is made to the appropriate volunteer dental provider. Dental care is given in the volunteer dentists' private offices, free of charge to the families. Children with CHIP or Medicaid are connected with a Medicaid/CHIP provider selected through their coverage.

The Ortiz sisters were identified as patients in the 2019-2020 school year, but some of their dental procedures were delayed due to the pandemic. After more than 15 appointments and procedures, the girls received their final appointments in June 2022. They are 5, 6, and 7 years old.

“I told my sister to be brave and to not be scared,” Ashley Ortiz, 6, said. “They are very nice people. I was happy to be in this place because they’re so nice.”

Tonya K. Fuqua, D.D.S., is the Director of Child Oral Health under the Center for Children’s Health, Children’s Oral Health Coalition and Save a Smile program. She was also the dentist who volunteered to provide dental care for the girls.

Dr. Fuqua knew the girls were afraid of going to the dentist since they had never been before. She noticed how brave they became by the last appointment.

“I got to see the transformation from dental disease to happy smiles, so I think that warms all of our hearts when we think of it that way,” Dr. Fuqua said. “When we think how the smile connects to the rest of the body, it does impact the child, from not being able to eat or to learn or to not be in pain.”

The Ortiz sisters were some of many children across the country who got behind on dental appointments and care due to the pandemic and dental office closures.

“These teeth that were just going to need fillings or stainless steel crowns now needed extractions,” Dr. Fuqua said. “Even one of the girls needed multiple extractions. That’s sad and that’s where COVID has taken us.”

The 2021-2022 school year was one of the first years that Save a Smile had well over 500 kids identified as a “class one, severe or urgent” category for needing dental care. Dr. Fuqua said that so many children have infections and abscesses. Usually, in previous years, there were 300 to 400 children considered class one.

Save a Smile has more than 86 volunteer dentists who provide children with comprehensive treatment as needed, whether it’s fillings, surgery, root canals, orthodontics, etc.

“We can’t do it without these private-practicing dentists saying yes, to opening up their doors to seeing hundreds of children for thousands of dental appointments and a ton of dental work being done,” Dr. Fuqua said. “We want to keep kids out of our emergency rooms at Cook Children’s and out of our Urgent Cares if we can – not for dental pain.”

Save a Smile community health workers will pick up students and take them to appointments if they don’t have transportation.

Jesusa Campos, Community Health Worker at Save a Smile, connects with families in need and met the three girls.

The girls’ parents were unable to attend the appointments, so Campos was there to coordinate between the parents and the dental offices. Sometimes within one week, Campos picked the girls up from school and drove them to multiple appointments.

She’s happy that the girls are doing better now and that they learned how to take care of their teeth.

“I love being able to help them to strive in life,” Campos said. “I can’t imagine having a toothache and having to go to school every day. I like helping them out and making sure they can continue healthy habits.”

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

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

The Child Life Zone at Cook Children's includes:

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

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

We are so grateful for the kindness, smiles, and love our patients and their families share with us every day, especially today. We hope your day is filled with lots of love, joy, and sweet treats! 

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

Every shift in the Emergency Room, I enter rooms of patients and families that have never graced the doors of a hospital, and within a few minutes of meeting them, we will be starting an IV, drawing blood and swabbing their nose and throat most likely. They will have already met upwards of 10 new people. Sometimes, within 10 minutes, I have prepared them for surgery.

I have less than five minutes to build rapport, establish trust and prepare them for this moment, but they are arguably the most critical five minutes for the patient’s emotional safety. Many people have never heard of Child Life before entering the hospital, and many leave without fully understanding what child life can provide. The Association of Child Life Professionals (ACLP) states that our mission is as follows:

We, as child life professionals, strive to reduce the negative impact of stressful or traumatic life events and situations that affect the development, health and well-being of infants, children, youth and families. We embrace the value of play as a healing modality as we work to enhance the optimal growth and development of infants, children and youth through assessment, intervention, prevention, advocacy, and education. 

Child Life exists within the hospital environment to combat the unavoidable stress that accompanies children and families from the moment they enter our doors.  We work alongside the doctors and nurses to build rapport and establish trust with the patients and families.

Medical care is a part of all our lives. However, many adults do not seek adequate medical care due to traumatic experiences as a child. If we can normalize the hospital environment and make it feel more comfortable, then we are able to meet the needs of children while also providing them with the care they need.

The emotional safety of children and families is our top priority, and we help children and families cope with stress. The ACLP defines emotional safety as “an intentional, interdisciplinary practice to promote resiliency, healing and trust for pediatric patients and their families during medical experiences.”

Assessing the patient

First, a Child Life Specialist will assess the patient. We establish how a child relates to and experiences the world. We create a plan to help them cope with their health care experience. Every child is different, and every age group responds differently.

We learn what is helpful for them, what they enjoy, what they fear and how they will respond. We are also assessing the same things in their caregivers and their siblings.

Babies need comfort and the assurance of security. Toddlers and preschoolers need some control as well as comfort. School-age children often need all the information and the opportunity to ask questions. Pre-teens and teens need and desire autonomy and independence.

Preparing for a treatment or procedure

Child Life Specialists prepare patients and families for what they are going to experience. Children respond to their senses, and we know from research that children can respond better when they know what they will see, feel, hear, taste and smell in advance.

The most important part of preparing children is the use of developmentally appropriate language. Child life specialists prepare patients for all procedures including taking their blood pressure (arm hug), inserting an IV (medicine straw), going to surgery, getting stitches (string band-aids), and much more.

When children know what to expect, they can more effectively respond to what they are feeling. Procedures take less time and are accomplished more effectively when a child understands what is happening before it is happening to them.

Supporting patients and families

Next, child life specialists support patients and families through procedures and experiences. Child Life can assist parents and caregivers in comfort positioning. We can also help patients utilize deep breathing and other techniques.

Often, patients cope beautifully with distraction. Typically, distraction works most effective after a child has been prepared and established trust with the medical team. This is where you will see a child life specialist utilize an iPad or other distraction tool.

Child life specialists also support patients and families through traumatic experiences by utilizing debriefing techniques and emotionally supporting patients and families with new diagnoses. We also support patients and their families through trauma, death, and dying experiences.

Child life specialists are educated in grief and bereavement and support families with legacy items and on-going grief support following trauma and tragedy.

Education

Child life specialists also educate patients and families on new diagnoses and other new information.

I often tell kids that we are paid to tell the truth. We believe that children cope better and are more successful with hard procedures by understanding what is happening and why. One moment we educate children about why an IV is the best way to help their bodies, and the next moment we explain what cancer is and how it affects their bodies.

Play

Often the best thing that we can do within a stressful environment is to bring a little bit of normal to the mix. For children, their normal is play. By incorporating play in every aspect of what we are doing at the hospital, we can communicate with the patients more effectively and allow the hospital environment to become much less threatening.

This looks like toys in every area from the ER to the clinics to the inpatient floors. We also provide medical play where children can be in control of the medical procedure and process through their own experiences.

This also looks like decorating rooms and celebrating events even in the hospital from birthdays to holidays to Easter egg hunts. I would argue that our patients and families have some of the most fun of their lives within our walls and this is one of the best parts of being a child life specialist.

Child Life has a unique role and goal within the health care team. Our job is to bridge a gap between very scary health care experiences and children. We want kids to walk away very proud of themselves even after a hard day. They can sit still. They can take deep breaths. They can do the hard one more time, one more day.

We want children to see that they have what it takes to get through hard things, and it’s our job to call it out and help them utilize their internal strengths. Child Life Specialists are available throughout the Cook Children’s system. It is our pleasure to support your children

Story by Heather Duge. Video by Tom Riehm.

When Shelbie Collins signed up for a camp just for kids with cancer in 2008, she had no idea the countless ways it would change her life.

As she battled cancer, little did she know that her future husband, Kaleb, was in his own fight with cancer and that their paths would intersect at Camp Sanguinity.

A Shocking Diagnosis

On the last day of second grade, Shelbie Collins woke up lethargic and not feeling well. Her mom thought it could be a virus but took her to Sandra Peak, M.D. of Cook Children's Pediatrics Lewisville - Castle Hills, just to be sure. At the office in Carrollton, Dr. Peak noticed a contusion on Shelbie’s arm and bruising on her chest. She suspected leukemia and immediately ordered blood tests.

“In that kind of situation, you’re working five steps ahead of what is happening in the room,” Dr. Peak said. “I ordered blood tests stat.”

That same day, Dr. Peak had to make the phone call every pediatrician dreads. She was not able to reach Shelbie’s mom, so she called her dad.

“That is a conversation that will forever be etched in my mind,” Dr. Peak said. “Her dad was instantaneously devastated and ready to attack the cancer. The security Shelbie’s parents had in their child’s health was pulled out from them instantly. That one phone call changed everything.”

Journey to Healing

Shelbie remembers her dad setting her on his lap and saying the words “you’re sick and we’re going to take you to Cook Children’s and will be by your side the whole time.” But Shelbie says it didn’t really sink in until she was at the hospital and heard the words “acute lymphoblastic leukemia” and “chemotherapy.” 

W Paul Bowman, M.D., Shelbie’s oncologist at Cook Children’s, would lead the team providing Shelbie’s comprehensive care. 

Treatment began immediately and a couple of weeks in, she underwent surgery to receive a port. Dr. Bowman talked to her parents about a therapy program he coordinated – Total XV protocol which is a research partnership between Cook Children’s and St. Jude Children’s Research Hospital that includes three phases and lasts 2 and a half years. 

Shelbie’s parents agreed to the protocol, and the first phase, induction, involved 46 intense days of chemotherapy. During the second phase, consolidation, Shelbie received high dosages of chemotherapy for three to four days biweekly. After two months of phase two, Shelbie moved to the final phase, continuation, with chemotherapy once a week.

“Through the inevitable ups and downs of chemotherapy, Shelbie remained a positive and happy child,” Dr. Bowman said. “She was always inquisitive and wanted to participate actively in her treatment with an understanding of the purpose behind each procedure and medication.”

Taking a Turn for the Worse

Sixteen months into her treatment, Shelbie’s doctors discovered she had gallstones. Later that evening, she spiked a fever and developed sepsis, a severe illness caused by an overwhelming infection of the bloodstream by toxin-inducing bacteria. Her kidneys shut down, and within 24 hours, she was in septic shock. Dr. Peak rushed to the hospital.

“When I walked into her ICU room, she was surrounded by so many doctors and nurses and on a ventilator. I could see the devastation in her parents’ faces. In that moment, it was the most fear I have ever felt as a physician.”

Dr. Peak and Shelbie’s other doctors discussed options as she only had a less than 1% chance of making it through the night. Britt Nelson, M.D., and the other doctors decided dialysis was the only option for her to have a chance at survival. Dr. Nelson's idea to do dialysis saved Shelbie’s life, Dr. Peak said.

“She was very sick,” Dr. Peak said. “Angels were flying so low around her that night.”

‘Miracles do Happen’

Shelbie was in an induced coma and fought through the infection for nearly three months in the hospital, not able to receive any chemotherapy. As the infection proved relentless, Shelbie proved resilient. She overcame sepsis and had to relearn how to walk and eat again.

What was planned for six months in rehabilitation ended up only being six weeks. After only three weeks, Shelbie’s determined spirit was on display as she started walking on her own.

“It was amazing to see Shelbie after that, walking into my office with all her energy and positivity. She is a reminder that miracles do happen.”

Shelbie’s cancer ultimately was put into remission, and she remains cancer-free.

Another Journey with Cancer Begins

In 2007, as Shelbie was nearing the end of her treatment, Kaleb Collins was just beginning his journey with cancer at Cook Children’s. He was 10 years old at the time and played baseball almost every day in his hometown of Wichita Falls. So, when Kaleb’s right knee began to swell, his parents thought it was a baseball injury.

After the first set of scans, doctors initially thought it was a growth plate fracture, but full body scans later revealed a different diagnosis – osteosarcoma (bone cancer) in his knee. 

Dr. Bowman also served as Kaleb’s primary pediatric oncologist as Kaleb underwent chemotherapy and a total knee replacement while taking part in a childhood cancer research study which involved 70 weeks of injections. In early 2010, Kaleb finished his treatment.

“Both Shelbie and Kaleb were fortunate to have the support of loving parents and family who contributed to a sense of security and emotional stability during their prolonged course of treatment and follow-up,” Dr. Bowman said. “They faced childhood cancer with courage and determination.”

“Looking back, I feel blessed,” Kaleb said. “I had a great mentor who was treated at Cook Children’s years ago and helped me through. I remember the people who cared for me always looking for ways to distract from the reason I was there, like Dr. Donald Beam and Dr. Kenneth Heym who would play games with me and amazing nurses who still keep in touch.”

Once-in-a-Lifetime Meeting

During the summer of 2008, Shelbie and Kaleb arrived at Camp Sanguinity – it would be her last year and his first time as a camper at a place they both found to be their safe haven. After meeting and sharing each other’s stories, they realized a common bond: they both viewed cancer as a part of who they were but something that did not define them.

“Having gone through cancer, we have more empathy for each other and a different lens for us to look at others,” Shelbie said. “We took our experiences and turned them into that strength.”

Kaleb describes his time at camp as an incredible week where kids with cancer just get to be kids.
In the summer of 2014, Shelbie and Kaleb went back to the camp for a leadership retreat for childhood cancer survivors. This time they reconnected and stayed in touch.

Shelbie remembers the day their relationship shifted to being more than friends when she visited him after surgery in December 2014.

“Sparks flew almost instantly,” Shelbie said. “I remember Kaleb texted me on my way home.”  

A New Chapter Together

Five years later, Kaleb proposed to Shelbie and the next chapter of their lives began in Oklahoma. Knowing the couple may have difficulty getting pregnant after undergoing chemotherapy, they were referred to a fertility specialist. While waiting for the appointment, Shelbie found out she was pregnant with their miracle baby. One of her first thoughts was moving back to be close to family and another very important person to them – Dr. Peak.

After their son, Graham, was born in 2021, the couple decided it was time to move closer to home.

“I made an appointment with Dr. Peak,” Shelbie said. “She started bawling. Graham was three months old when he first met her. Dr. Peak being Graham’s doctor has been the cherry on top. Watching her take care of our miracle baby is the biggest blessing to us.”

Dr. Peak feels the same way and loves her “grandpatients.”

“I have always wanted to be a doctor since I was a kid and played clinic for fun,” Dr. Peak said. “It is moments like taking care of Graham that remind me how blessed I am to be there for the whole family.”

Gaining Strength from her Patients

When Dr. Peak was faced with her own health challenge a couple of years ago, it was her experience with Shelbie that helped her get through the tough times.

“When someone tells you it’s cancer, your whole world crashes,” Dr. Peak said. “It had been years of me giving that news and I never dreamed I would be on the other end.”

In moments of despair, as she fought through treatment to fight breast cancer, Dr. Peak thought of Shelbie and other kids who handled cancer with such grace and strength.

“How could I not be strong?” 

Giving Back to Others

Shelbie and Kaleb visit Cook Children’s for annual checkups together and provide research on the protocols as part of the Cancer Survivor Program. They have a passion for giving back in ways they were given – such as being counselors at camp. They served in that role for four years and have plans to go back.

Kaleb said he shares hope with the campers at Camp Sanguinity by showing them they have a lot to look forward to as survivors, counselors and even having a family one day.

“Camp is everything,” Shelbie said. “It is so impactful, and we have every intention of going back as counselors this year.”

Shelbie also regularly gives back in another way – her job. She says that watching nurses interact with families while she was a patient and shadowing in the Hematology-Oncology Clinic at Cook Children’s gave her a passion for helping others in the medical setting but in a different area.

“I wanted to save that part of life for camp,” Shelbie said. “It hit a little too close to home being back in the Oncology area.”

Shelbie now works as a nurse in the postpartum unit at a local hospital.

Part of the Family

Dr. Peak beams as she talks proudly about Shelbie and all she has overcome. She truly feels as if Shelbie and her family are part of hers now.

“I carry my families and kids with me, and they will always be a part of me,” Dr. Peak said. “Shelbie is with her miracle baby now, but she is my miracle baby.”

Go here to view Camps for Kids at Cook Children's.

The medical professionals were separated into two teams, one for each girl. Those in purple scrub hats belong to JamieLynn’s squad, while Team AmieLynn dons the green. Everyone worked together until the babies were separated, then each team focused solely on their assigned baby.

We want to acknowledge and celebrate the individuals who successfully performed this historic surgery at Cook Children's! 

• Chandra Reynolds, M.D., lead anesthesiologist
• Cole Carrillo, CRNA, lead CRNA

Team A (JamieLynn)

• Jose Iglesias, M.D., primary surgeon
• Daniel Lodwick, M.D., first assistant
• Ben Gbulie, M.D., plastic surgeon 
• Syma Monzales, RN, Coordinator
• Sarah Shaabani, RN
• Darrell Wortham, CST
• Claudia Hernandez, CST
• Imad Yamout, M.D., anesthesiologist
• Michael Gonzalez, CRNA
• Raul Guerrero, anesthesia technician

Team B (Amie Lynn

• Marty Knott, D.O., primary surgeon
• Chad Hamner, M.D., first assistant
• Eric Hubli, M.D., plastic surgeon
• Sarah Doyle, RN, coordinator
• Kristen Cherry, RN
• Brittney Fuentes, CST
• Tania Gonzales, CST
• Gavin Fine, M.D., anesthesiologist
• Paul Downing, CRNA
• Daniel Jones, anesthesia technician

Team C (backup on standby)

• Hailey Hanson, RN
• Jamie Gomez, RN
• Rosa Leos, RNFA
• Diana Bravo, CST

Neonatologists

• Chad Barber, M.D.
• Mary Frances Lynch, M.D.

, a Twisted X Global Brands company, have joined together to create the Cook Children’s by Twisted X Collection. Twisted X will donate 100 percent of wholesale proceeds from every pair of shoes sold from this collection directly to Cook Children’s.  

“The partnership between Cook Children’s and Twisted X furthers our commitment to providing patients and families with a one-of-a-kind resource tailored around their health care needs to enhance the overall experience,” said Cook Children's Health Foundation Senior Vice President and Chief Development Officer Grant Harris. “We are constantly looking for new ways to provide compassionate care and we are proud to come together with Twisted X who shares this passion and embraces creativity as a therapeutic outlet.” 

From factory to retailer, the entire supply chain has come together in support of the collection to deliver the footwear at a reduced cost to maximize the donation. The collection includes four unique designs made by patients at Cook Children’s with the help of Twisted X Designer, Tuan Lee. Each pair is named after the artist and embodies their dream pair of footwear to achieve a perfect balance of style and comfort in the form of a slip-on kick.  

• The Alex: Alex is a 6-year-old with Ketotic Hypoglycemia. She loves math, enjoys riding her bike and uses her imagination to go on adventures as colorful as her bright shoe design.  
• The Rowan: Rowan is a 9-year-old with Sigmoid Sinus Vein Thrombosis. She loves riding horses and is a member of 4H, which is highlighted by the western vibes of her cactus green design.  
• The Brianna: Brianna is a 14-year-old with Epidermolysis Bullosa. She has painted several canvases displayed inside Cook Children’s Media Center and especially loves to paint butterflies, which are prominently featured in her sky-blue design.  
• The Isaac: Isaac is a 15-year-old with Spina Bifida. He enjoys art, video games and Marvel movies, using Iron Man as the inspiration behind his sleek silver design. 

"Twisted X is dedicated to making a positive impact on the community we serve, and Cook Children’s is a perfect partner for us,” said Twisted X CEO Prasad Reddy. “We know that little steps can make a big impact and our hope is to raise awareness within the western industry for the amazing care provided at Cook Children’s in order to give back to those who need it most. This collection is a true embodiment of comfort that gives back and brings so much joy to footwear design.”  

"I like my shoe and my favorite part about it is that it’s rainbow colored and I love rainbows. And I love this shoe the best because I painted it and I got to make it however I want,” said Alex. “Art helps me relax and calm down my nerves from the pain that I get from my skin condition. I usually paint butterflies because it represents my illness. It’s like butterfly skin because it’s fragile,” said Brianna.  

Cook Children’s and Twisted X will celebrate the collection with a launch event today at Cook Children’s Fort Worth Campus. The collection is now available online at twistedx.com/pages/cook-childrens and in-store at select retailers nationwide. To learn more about the collection and the shoe’s young designers, visit cookchildrens.org/twistedx.    

Written by Ashley Antle. 

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

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

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

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

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

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

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

Double Blessing

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

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

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

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

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

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

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

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

Family Ties

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

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

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

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

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

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

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

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

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

Delivery Day

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

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

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

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

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

Home Away From Home

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

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

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

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

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

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

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

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

Journey to Separation

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

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

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

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

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

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

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

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

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

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

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

Separation Day

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

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

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

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

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

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

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

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

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

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

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

There is still a long way to go.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Road to Recovery

Recovery is best described as slow.

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

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

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

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

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

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

Santa Claus stopped by to visit our tiniest patients in the Neonatal Intensive Care Unit to spread Christmas cheer. The babies were dressed in festive outfits to celebrate their first Christmas.

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

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