The first time Debbie heard the words “congenital diaphragmatic hernia” she actually felt relieved. Her pregnant wife, Jennifer, had just undergone a two-hour sonogram at a maternal-fetal practice to check their baby for suspected abnormalities. Initially, the doctor thought their son, Eli, could have a heart defect, so when he said the word “hernia,” it seemed much more benign.
Then they learned what they were up against.
“The doctor said, ‘I’m really sorry, but it isn’t that kind of hernia,’” Debbie recalled.
A congenital diaphragmatic hernia (CDH) occurs when the diaphragm fails to fully develop, allowing the abdominal organs to move into the baby’s chest cavity. This can prevent lung growth and cause other serious health issues. Statistics showed that, at best, Eli had a 50 percent chance of survival.
“He told us that even if our baby survived it would be a very long road. Then he recommended terminating the pregnancy,” Debbie said. “We were devastated.”
Help in their own backyard
Eli’s parents were determined to give their son the best possible chance of survival. Although based in Colorado, the family frantically researched the top maternal fetal health programs across the country with the best CDH outcomes. Their search led them to Boston Children’s Hospital. They spoke to a specialist there, who gave them some surprising advice.
“She asked why we wanted to travel across the country when we have such a great program in our backyard at Children’s Hospital Colorado,” Debbie said.
The Colorado Fetal Care Center (CFCC) at Children’s Colorado is one of the few comprehensive maternal and fetal care programs in the world. The team of top fetal surgeons, physicians and experts treat the most complex and high-risk pregnancies. And with a dedicated CDH program, they have some of the best survival rates in the country.
Debbie and Jennifer called Children’s Colorado, and they got the family an appointment the next week to conduct testing and scans. They met with multiple specialists, including Dr. Kenneth Liechty, a renowned fetal surgeon and director of the Colorado Fetal Care Center.
“We were terrified when we got the initial diagnosis, but after coming here, we felt so hopeful,” Jennifer said.
Debbie and Jennifer had originally planned to go to Boston or Philadelphia for a second opinion.
“Instead, we walked out the doors after meeting with Dr. Liechty and the rest of the team and said, ‘This is where we need to be,’” Debbie said. “We never looked back.”
Jennifer was monitored closely at Children’s Colorado until she delivered at the Colorado Fetal Care Center on April 27, 2017. Doctors warned that Eli likely wouldn’t make a sound, yet he managed to let out a loud cry just before being whisked away to the stabilization room.
“There were 15 or 20 people with him, and they all knew exactly what to do,” Debbie said. “They were intubating him, putting lines in. It all seemed horrific. Then Dr. Liechty came over and put his arm around me and explained what was happening while I looked on helplessly.”
It took more than two hours to stabilize Eli. And that was just the beginning of his challenges.
Within hours of being admitted to the Neonatal Intensive Care Unit (NICU), his heart started racing, and he ended up needing two emergency chest tubes to address a collapsed lung. The initial X-rays of his tiny body revealed that his entire stomach, spleen, colon and intestines were stuck in his chest cavity, squeezing Eli’s lungs. His heart had migrated under his right armpit, and doctors feared he might be headed towards a pulmonary hypertensive crisis.
“It just kept getting worse,” Debbie said.
At four days old, Eli underwent surgery with Dr. Liechty to correct the hernia. Jennifer and Debbie wanted him to be baptized beforehand, but their minister was out of town. At the last minute, one of his primary nurses arranged for the hospital chaplain to baptize Eli in his hospital room.
“All the doctors were waiting outside the door to begin the surgery, but our nurse held them at bay until we could do the baptism,” Debbie recalled.
Eli awoke from surgery two hours later, swollen, ventilated and connected to a dozen tubes. As bad as he looked, the surgery was a success.
“They did X-rays that same afternoon, Jennifer said. “All of his organs had moved back down into his abdomen, and you could already see his heart starting to shift back to the middle.”
Home away from home
As Eli continued to heal, the NICU became the family’s home away from home. “We literally lived here,” Debbie said. “The nurses kept making us dinner reservations, trying to convince us to spend a night away, and we kept cancelling. We pretty much refused to leave.”
A few days after his surgery, Eli had his ventilator removed. After a few hours, however, Eli was struggling to breathe, so his care team tried a new technology called NAVA as a last resort. NAVA is not currently available at many hospitals, but it was exactly what Eli needed. This technology worked with his ventilator, using electric impulses to prompt Eli to breathe. It was far less invasive and allowed him to be slowly weaned off his ventilator. At one week old, he was stable enough for his mothers to hold him for the first time – one of the most precious memories of their hospital stay.
“In the beginning, he was connected to so many tubes, pumps and ventilators,” Jennifer said. “Every time he was disconnected from another piece of equipment, we celebrated.”
After 47 days, Eli was finally able to go home.
Joyful days ahead
Eli is now a joyful 10-month-old who loves to smile and explore the world. He continues monthly physical therapy at Children’s Colorado, and he’s reaching new milestones every month. Eli also attends the CDH/Hypoplasia Multi-Disciplinary Clinic at Children’s Colorado, which brings together caregivers from the Breathing Institute, Surgery Department, Developmental Pediatrics and Nutrition for a one-day clinic. By closely coordinating his care, Eli’s team of doctors can ensure he continues to thrive.
“Going forward, Eli will continue to be at a higher risk for certain things like respiratory infections and the unlikely possibility of re-herniation,” Debbie said. “We have to continue to watch his lung development, but overall his prognosis is good.”
Eli also has occasional follow-up visits with Dr. Liechty, whom the family has affectionately nicknamed “Batman.”
“He’s our superhero,” Debbie said. “He was our quarterback and our constant. He saved Eli’s life.”
Looking at their smiley baby boy, it’s hard to believe that just one year ago, Jennifer and Debbie didn’t know if he would survive. Today, they’re planning his first birthday party.
“This milestone means everything to us,” Debbie said. “We didn’t know if he’d be here. Everything we originally dreaded is now behind us. Knowing that Children’s will be here for us when we need them brings us peace of mind and allows us to live life to the fullest with our family.”