Delilah’s story: K-pop, strawberries, confidence and resilience

Six-year-old Delilah makes friends everywhere she goes. When she met a new classmate who didn’t speak English, they still figured out that they both love K-pop, dancing and strawberries — and became best friends. She also made fast friends with the Child Life specialists at Children's Health℠ who brought her coloring pages, took her to the hospital library and helped make medical procedures a little less scary.

Delilah is no stranger to medical procedures. She had 20 surgeries before her fourth birthday. Born with a rare condition called VACTERL association, which affects how the body develops in the womb, Delilah has differences in her spine, hands and legs. She also has a cloacal anomaly, where multiple body systems, including urinary and digestive tract, do not develop typically during pregnancy.

“Doctors said she may never walk, but now she’s climbing rock walls and doing taekwondo with a prosthetic leg,” says her mom, Kristen. “She doesn’t let anyone tell her what she can’t do, and she blows my mind with what she’s capable of.”

Diagnoses they’d never heard of

On Kristen’s 20-week ultrasound, they learned that Delilah had some differences in her hands and that the tibia bone in one of her legs wasn’t growing. The care team told Kristen and her husband, Brian, that their baby may have other differences that they couldn’t see on the ultrasound.

“We never expected the cloacal anomaly. We’d never even heard of it,” Kristen says.

Delilah had her first surgery at the hospital where she was born at just a day old and a second surgery two weeks later. In the months that followed, her family received more diagnoses: a heart condition that resolved on its own and spinal cord differences that could affect her ability to move. Her doctors recommended an amputation and prosthetic for her right leg so she could learn to walk.

Her family started looking for a specialist and options to help her use the bathroom more independently. They traveled to the East Coast for a bowel procedure, but realized the long-distance thing would be too hard, especially during the pandemic.

Kristen went on a mom’s Facebook group where another mom recommended the then-new Colorectal Care and Pelvic Center at Children’s Health.

“We jumped on it. And it was the best thing we could have ever done for Delilah,” Kristen says.

Specialized care for kids with complex colorectal needs

At first, Delilah’s family was a little overwhelmed by all the specialists at Children’s Health. Then they saw how smoothly they worked together.

They soon got to know Sharon Kluger, APRN, Nurse Practitioner - Pediatric Surgery, who talked them through the next steps.

“Many families are shocked by their child’s diagnosis, which is often one they’ve never heard of," Kluger says. “We start by reassuring them that even though what their child has is rare, they can still usually lead full and typical lives — and we’ll be there for them every step of the way.”

The care team recommended a procedure called a cecostomy for Delilah because other options to empty her bowels weren’t working well. It's a minor procedure to place a small tube in a child’s belly to help them fully empty their bowels on a predictable schedule.

“It’s given her a level of continence I didn’t know was possible,” Kristen says. “She can go to school and play without needing a bag or anything attached to her.”

The care team that means the world

Kristen jokes that if anyone on Delilah’s team tries to leave Children’s Health she “won’t allow it.” She loves Kluger and Program Manager Michele Phelan, who’ve been caring for Delilah since she was a toddler.

Kristen also knew Delilah was in good hands with Irina Stanasel, M.D., Pediatric Urologist at Children’s Health and Assistant Professor at UT Southwestern, when they talked about Delilah’s next surgeries. She told Kristen that they didn’t need to set a strict timeline. Instead, they planned her procedures based on how Delilah was doing and what would best serve her unique needs at different ages and stages.

“Dr. Stanasel knows her field so well — and she knows that I know my daughter best,” Kristen says. “She works with me on this human level to make the choices that are best for Delilah.”

Understanding differences

Kristen grew up with a brother who had complex medical needs. She knew she wanted to teach her kids that differences and disabilities are just a fact of life, not something to fear.

When Delilah was born, that lesson became even more meaningful. Today, Delilah's two older siblings are some of her biggest advocates. When other kids ask about Delilah's hands or sparkly prosthetic leg, they'll jump in if she doesn’t feel like explaining, saying, "That's how she was born, isn’t that cool?" or "Yeah, everybody's different."

Having faced dozens of surgeries and procedures, Delilah shares advice for other kids who are scared when they have a procedure: Just think of something you like — like K-Pop and strawberries.

Kristen would tell other families: It's going to be scary. You may be in the hospital more than you ever wanted to. It’s okay to grieve because your child’s life will look different than you expected. Ask all your questions.

“And then just breathe,” she says. “Because at the end of the day, kids thrive. Delilah is doing so well. She's amazing and her differences do not slow her down.”

Learn more

The General Pediatric Surgery Program at Children’s Health provides expert surgical care tailored to the unique needs of every child, from newborns to young adults. Each year, we partner with hundreds of families navigating complex bowel and pelvic conditions through our Colorectal and Pelvic Center, our Bowel Management Program and our Pediatric Neurogastroenterology and Motility Disorders Program. We provide compassionate, coordinated care and support as early as possible, helping children thrive and achieve the best possible quality of life for years to come.