Meet Emma, who thinks of Children’s Health℠ ‘as a second home’

As a mom, Sara had a feeling that something wasn’t quite right with her newborn daughter, Emma. But as a physician, it only took one glance at Emma’s abdominal X-ray for Sara to know something was very wrong.

“It was terrifying,” said Emma’s mom, Sara, who is also a surgeon at UT Southwestern. “Both the mom brain and the doctor brain are impossible to turn off, so as soon as I saw her X-ray, I knew she had a significant problem that would need surgery.”

That’s when baby Emma was transferred to Children’s Health.

A million questions

At Children’s Health, their care team soon had an explanation for the abnormalities on Emma’s X-ray:Hirschsprung’s disease, a condition where a child is born without important nerve cells in part of their colon that help the body pass stool. Without them, a child can’t poop on their own.

“A million questions were running through my head,” Bryan, Emma’s dad, said. “Where did this come from? Why did this happen? And how will it impact Emma’s life?”

Physicians then shared more about Emma’s particular case: For most children, Hirschsprung's disease only affects a small section of their colon, but Emma has a rare form that affects her entire large intestine and part of her small intestine.

“Understanding that she would first need an ostomy bag so she could poop, and ultimately a bigger surgery to remove a significant portion of her intestines, was a big blow,” Bryan said. “We spent the first months of Emma’s life feeding her, watching her grow — and learning how to manage an ostomy bag.”

A major surgery at 6 months old

Sara consulted with colleagues across the country, looking for the best program for the care Emma needed. She soon realized they were already right where they needed to be.

“We’re fortunate enough to have a high-level academic children’s hospital in our backyard, with doctors with lots of experience in Hirschsprung's,” Sara said. “That gave us the comfort and support to know that she’s getting the best care.”

Although it still wasn’t easy to send their 6-month-old into major surgery, the procedure went smoothly.

A week after surgery, Emma had recovered and was ready to go home, but she couldn’t pee on her own.

“We have a saying now: Emma does things in Emma’s way, on Emma’s time. She doesn’t follow the book,” Bryan said. “She has an extremely rare form of Hirschsprung's and then experienced a rare urinary complication post-surgery.”

Her care team explained that Emma had urinary retention and could not empty her bladder completely. Either she would regain her bladder function over the next six months, or she would probably never regain function.

That’s when her parents learned how to use a catheter to help Emma empty her bladder. And although Sara had catheterized adults in the hospital, the idea of doing it at home for her own child was daunting.

“I thought there was zero way I’d be able to catheterize my own child at home, let alone Bryan who doesn’t have any medical training,” Sara said. “But the nurses and care team were amazing. They taught us how to do so many things I never imagined that we’d be able to handle at home.”

As they neared the six-month mark, they started to accept that Emma might not regain her bladder function.

“Magically, almost six months to the day, her bladder woke up, and she was able to start peeing on her own,” Sara said. “That was a big relief.”

A second home

Hirschsprung's disease affects different kids in different ways. Some have few complications after surgery, while others experience infections, constipation and other bowel symptoms as they grow up.

Throughout her toddler years and early childhood, Emma was in and out of the hospital with a number of infections — including a case of norovirus that required her to be isolated in the hospital for three weeks.

“That’s when the Child Life team really kept us sane,” Bryan said. “They brought her something different to do every day, they let her pick out games and books. Even though she was in isolation, she had something to look forward to.”

Child Life team members manage the hospital’s playrooms and provide individual play sessions at the patients’ bedside. Services like these are one of many supportive offerings at Children's Health that are sustained and enhanced by generous donors.

An outgoing kid, Emma has bonded with many of her care team members, including one of her favorites, Dr. Samir Pandya, M.D., Pediatric Surgeon at Children’s Health. He calls her “lashes” for her distinctive long eyelashes, and they always greet each other with a special salute.

Throughout her hospitalization, music therapists also helped Emma fall in love with music, and the School Services department made sure Emma kept up with school so she didn’t have to repeat kindergarten.

“She thinks of Children’s Health as a second home. She’s comfortable there, she doesn’t think of it as a scary place,” Bryan said. “That really speaks to the quality of care.”

A bridge to lifelong care

These days, 6-year-old Emma loves gymnastics, dancing and making videos with her brother. Despite everything she’s been through, she walks through the world with a contagious positivity.

Her parents know that Emma may deal with complications of Hirschsprung's disease for the rest of her life, so they’re grateful to have found an incredible team at Children’s Health who are deeply invested in her care.

When thinking about her family and Emma’s future, Sara is grateful for the comprehensive care she received at her second home and excited to know that a new Dallas pediatric campus will provide incredible care and a second home for future generations of children when they needed it most.

As a physician and a mom who understands every second counts for kids who need specialized care, she appreciates that plans for the new Dallas pediatric campus include a new fetal care center for complex maternal and fetal health with direct access via a connector bridge to William P. Clements Jr. University Hospital.

Sara also sees the partnership between Children’s Health and UT Southwestern as a metaphorical bridge to the expert adult care that Emma will one day need.

“The bridge will connect two excellent hospitals with two very strong academic centers,” Sara said. “Emma will always have Hirschsprung’s disease, so we’re very grateful for an even stronger connection between the two North Texas health care systems. We know Emma will have the care she needs throughout childhood and into adulthood.”

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