A carefully planned delivery for a baby with severe CDH 

Because babies with severe CDH need specialized care immediately after birth, the team created a detailed delivery plan. 

Jax was delivered by scheduled C-section at 38 weeks in CHOP's Garbose Family Special Delivery Unit (SDU), the world’s first birth facility within a pediatric hospital created specifically for babies diagnosed before birth with complex medical conditions. Designed for high-risk deliveries, the SDU brings together maternal-fetal medicine specialists, obstetricians, neonatologists and pediatric surgeons so both mother and baby can receive expert care under one roof, without needing to be transferred to another hospital after delivery.  

Immediately after birth, Jax was taken to an adjoining stabilization suite, where the SDU's specialized Newborn Stabilization and Resuscitation Team was waiting. Having spent weeks preparing for his delivery, the team quickly evaluated and stabilized him using advanced monitoring and specialized equipment before he was transferred to CHOP's Level IV Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU) for ongoing care. 

The first days were overwhelming. Just 12 hours after birth, doctors determined Jax needed extracorporeal membrane oxygenation (ECMO), a form of life support that gives the heart and lungs time to rest and heal. 

He spent 13 days on ECMO. 

There were setbacks. He developed an infection. His ECMO circuit had to be changed twice. His vital signs often fluctuated. 

Seeing her newborn connected to tubes and life-support equipment was almost impossible to process. 

"It was very touch and go and scary," Kayte says. 

Still, even during the hardest days, the doctors and nurses remained calm and confident, reminding the family to trust the process. 

Milestones that brought hope

At 3 weeks old, Jax underwent surgery with fetal and pediatric surgeon William Peranteau, MD. During the procedure, Dr. Peranteau moved Jax's abdominal organs back into his abdomen and repaired the large hole in his diaphragm. 

For the first time, the team could see that Jax had developed a small right lung. From there, the roller coaster slowly began to level out. 

One of the biggest milestones came when Kayte was finally able to hold her son. 

"It's the first time his heart rate decreased and stabilized," she says. "That moment will go down in history as the best day of my life." 

Even milestones most parents never think about became reasons to celebrate. 

After surgery, Jax had his first bowel movement. 

Before the repair, many of his abdominal organs had been crowded into his chest instead of his abdomen. Seeing his intestines begin working normally after surgery was an important sign that his body was healing. 

"I literally remember jumping up and down with the nurse in the room and hugging her and just being so excited," Kayte says. 

At 5 weeks old, Jax was extubated. By 6½ weeks, he was breathing on his own. While his lungs continued to get stronger, he still couldn’t feed by mouth, so he received nutrition through a feeding tube. 

Eight weeks after birth, he was finally able to go home. Although he still needed the feeding tube, he no longer needed oxygen support. Before discharge, CHOP's team taught Kayte and her husband how to care for the feeding tube at home, helping them feel confident as they transitioned from the hospital to home. 

Growing stronger every year

Today, Jax is 8 years old. 

He continues to receive care through CHOP's Pulmonary Hypoplasia Program, where specialists monitor his lung health and development. Over the years, he has also received care from pulmonology, cardiology, nutrition, psychology and surgery. 

After leaving the N/IICU, Jax was typically hospitalized about twice a year — often for a week at a time — when illnesses such as RSV, the flu or even the common cold became serious because of his lung condition. While he still manages asthma and occasional respiratory illnesses, he recently celebrated a milestone his family once could hardly imagine: one full year without a hospital admission. 

The tiny right lung doctors weren't even sure existed before birth has continued to grow and is now fully inflated. 

Today, Jax plays baseball, builds incredibly complex LEGO® sets and recently gave a presentation at school about his CDH journey. 

"He's tiny," Kayte says, "but he is fierce." 

A message for other families 

When parents receive a CDH diagnosis, Kayte knows how frightening those first days can feel. 

"In those first moments, those first weeks, even when you're in the N/IICU, things feel so hopeless," she says. 

But she also knows hope can grow, even during the hardest days. 

"You're in a place where these doctors and nurses know exactly what they're doing," she says. 

Stories of hope helped Kayte through the hardest days.

Now, she hopes Jax's story can do the same for another family beginning their own journey.