Caring for Emerson from prenatal to NICU and beyond our walls

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Before she was born, Emerson was diagnosed with an omphalocele – a rare abdominal wall defect that occurs when a baby’s intestines develop outside the body. In Emerson’s case, the defect was severe, with only a thin membrane covering her intestines.

Knowing their daughter would need specialized care right away, Emerson’s parents, Chase and Sara, began searching for the best possible place to treat her complex condition.

Choosing specialized care close to home

After receiving several recommendations, Chase and Sara chose Children’s Health, where Emerson could receive highly specialized care from before birth through the FETAL Center. Early in the second trimester of the pregnancy, the family was connected with a multidisciplinary team who they would work with long term.

With guidance from that team, they developed a clear, coordinated plan for Emerson’s birth, bringing together the specialists who would care for her immediately after she arrived. Having that plan in place gave the family clarity and reassurance during an uncertain time.

Soon after she was delivered at UT Southwestern, Emerson was transported to the Level IV Neonatal Intensive Care Unit (NICU) at Children's Health because the sac surrounding her omphalocele was so large and delicate that it required specialized care.

“We didn't get to hold her until she was 16 days old,” says Sara, Emerson’s mom.

Because of the size of her omphalocele, Emerson faced several secondary complications. She required a feeding tube and struggled with aspiration, which led to repeated lung infections. She also needed increasing levels of respiratory support, progressing from high-flow oxygen to CPAP and eventually BiPAP.

“As my prenatal specialists had anticipated, surgically repairing her omphalocele wasn't an option until she grew big enough for her organs to be safely returned to her abdomen,” Sara says.

Emerson spent 75 days in the NICU, where her care plan was tailored specifically to her medical needs and her family’s goals by the Maternal, Fetal and Neonatal Care team.

“This was our home for 75 days,” says Chase, Emerson’s dad. “Everybody was going out of their way to make you feel like you were important and you’re not just a bed number. The Children’s Health team definitely went above and beyond.”

A care plan designed around the family

From the very beginning, Emerson’s care involved close coordination between specialists in maternal-fetal medicine, neonatology and pediatric surgery. This team worked together to plan every step of care – from pregnancy and delivery through Emerson’s NICU stay and transition home.

“That is all a part of this multidisciplinary approach where the family truly feels like there’s someone with them for each part of what they have to go through, whether it is the emotional support or medical advice,” says June Hu, M.D., Neonatologist and Co-Director of the FETAL Center at Children’s Health and Assistant Professor at UT Southwestern.

Families facing complex pregnancies often need answers long before their baby is born. By creating a clear plan early on, the care team helped Chase and Sara understand what to expect and feel supported during an uncertain time.

That support extended beyond medical expertise. From a father’s perspective, Chase said he felt included every step of the way.

“I felt like I was valued,” he said. “They talked to me, asked me questions and made me feel like my opinion was valid.”

Supporting more than medical needs

Life in the NICU can be overwhelming, especially during a long stay. Alongside Emerson’s medical team, various support professionals worked with her family to focus on emotional well-being and development.

“We have social workers, case managers, psychologists, child life specialists, music therapists and developmental therapists – all working alongside the medical and bedside teams,” said Sushmita Yallapragada, M.D., Medical Director of the NICU at Children’s Health and Associate Professor of Pediatrics at UT Southwestern.

For Sara, that support made a lasting difference.

“The doctors and nurses were focused on getting her healthy,” she said. “But the therapists helped with all the things that I thought were falling by the wayside because she was in the hospital – like her development, feeding, even things like head shape. It rounded out her care.”

Over time, those caregivers became more than a care team.

“They became part of my village,” Sara says. “They provided feedback when I asked when it was time to make difficult health decisions that helped me feel more confident that I was making the right call.”

Specifically, Sara remembers Katy Brown, Occupational Specialist, who secured a custom protective brace for Emerson’s large omphalocele before she went home; Amber McBeth, Speech Therapist, who helped preserve Emerson's feeding skills while she relied on a feeding tube; and Dawn Schindler, Lactation Consultant, who made one of Emerson's biggest milestones possible – breastfeeding.

Preparing for life at home

As Emerson grew stronger, the NICU team began preparing her parents for the next big milestone: bringing her home.

Together, they created a discharge plan that ensured Chase and Sara felt confident caring for Emerson outside the hospital, with the right equipment, education and resources in place.

The care team worked closely with the family on goals that would help Emerson safely transition home. This included supporting her progress with feeding by mouth instead of relying on a feeding tube, as well as carefully monitoring and weaning any medical support she needed, like oxygen. These small but important milestones helped build the foundation for life beyond the hospital.

Continued care beyond the NICU

After discharge, Emerson’s care continued with frequent follow-ups across multiple specialties, including cardiology, gastroenterology, infectious disease and developmental care through the Thrive program. Sara also credits Charles Robert Hong, M.D., Pediatric Surgeon at Children’s Health and Assistant Professor at UT Southwestern, for being patient and kind and having “the best bedside manner I have ever experienced from a surgeon.”

She also received ongoing support from a dedicated NICU follow-up nurse who checked in regularly and helped the family navigate challenges like securing medical equipment and in-home nursing care.

“That was huge for us,” Sara said. “It felt like we still had someone from the hospital walking through it with us.”

At home, Emerson continued feeding therapy, speech therapy and physical therapy as she worked toward developmental milestones. Early on, she relied on a feeding tube while learning how to eat and drink on her own.

“Some of the hardest moments were things like placing the feeding tube,” Sara said. “But over time, we got more confident – and so did she.”

Those efforts paid off in meaningful milestones: sitting up on her own, saying her first word and eventually learning to drink from a straw and eat independently.

“It felt like a light bulb went off,” Sara said. “Graduating from feeding and speech therapy was such a big moment.”

Today, Emerson has reached an exciting milestone in her recovery. She has had her feeding tube removed and completed her surgical closure, with follow-up visits confirming she is healing well.

A future filled with personality and possibility

Now a thriving toddler, Emerson’s personality shines just as brightly as her progress.

“She’s the happiest baby,” Sara said. “She’s very social and just started daycare – and she’s thriving there.”

Emerson loves music, Elmo and spending time outdoors. She enjoys bubbles, climbing at the playground and going up and down steps over and over again. Greek yogurt is one of her favorite foods, and she keeps her parents on their toes with her growing vocabulary.

“She tries so hard to communicate,” Chase said. “And she gets frustrated if you don’t understand her.”

At home, Emerson is surrounded by love from her two older brothers, both of whom she affectionately calls “Bubba.”

“They’re amazing with her,” Sara said. “They play, feed her, watch Elmo together – it’s really sweet.”

Emerson’s story reflects more than medical complexity – it’s about resilience, partnership and the power of comprehensive care that extends beyond hospital walls.

For her parents, every milestone is a reminder of how far she’s come.

“Every step she takes, every milestone she reaches – they had a part in that,” Chase said of her care team. “They’re a part of our family now.”

Learn more

Our Maternal, Fetal, and Neonatal Care programs provide coordinated care to support families facing complex pregnancies – from diagnosis to delivery and beyond. The team includes experts from the UT Southwestern Maternal-Fetal Medicine (MFM) Program, neonatologists, OB-GYNs, as well as community-based MFM specialists and other pediatric specialists across the region.