Congenital Diaphragmatic Hernia (CDH) Program

Helio and ECMO Support

Helio’s Future is Bright Thanks to Lifesaving CDH Care

When Olivia didn’t return home at her usual time after her 19-week prenatal visit, her husband, Robert, knew something was wrong.

Olivia had gone in for ultrasounds in the past, but this time, it was different. Her care team started taking unusual measurements throughout the scan. Because their family had a history of heart defects, Olivia’s mind started racing. She had questions for her doctors, but didn’t get the answer she was expecting.

“They told me that my baby did have heart issues, but that wasn’t exactly what they were concerned about,” Olivia said.

Instead, the mom-to-be learned that her baby had a congenital diaphragmatic hernia (CDH)—an opening in the diaphragm, the muscle that helps with breathing. The opening, or hernia, causes the stomach, spleen, liver and intestines to move up into the chest. As a result, the lungs and heart have little room to grow and develop.

“I didn’t really have time to process the information or put the pieces together,” Olivia said. “All I could think was, ‘I don’t know if my baby is going to live or not.’”

She immediately went home to tell Robert the news, and they started searching for as much information as possible. 

“It was a hard few weeks,” Olivia said.

Top-Notch CDH Care, Close to Home

But Olivia and Robert knew exactly where to turn for help. Thankful to live near Cincinnati Children’s, which they already knew as one of the best children’s hospitals in the country, they were eager to learn about its specialized CDH care. In fact, the Congenital Diaphragmatic Hernia Program had recently undergone a major overhaul.

Paul Kingma, MD, PhD, CDH specialist and director of Cincinnati Children’s Bronchopulmonary Dysplasia (BPD) Center, led the program changes.

“We’ve seen impressive results already,” he said. “From decreased time on mechanical ventilation to shortened hospital stays, it’s exciting to see how these changes are improving the outcome of babies with CDH in several ways."

Dr. Kingma added that Cincinnati Children’s has CDH specialists across many specialties, including neonatology, pediatric surgery, cardiology and more.

“There’s really no other place with all those things in one package,” he said.

The expertise gave Olivia and Robert a renewed sense of confidence.

“Many people on the CDH team have been there for 20-plus years,” Olivia said. “We knew that Cincinnati Children’s was very capable of our baby’s care.”

Help Making the Right Decisions at the Right Time

Cincinnati Children’s Pediatric Palliative and Comfort Care Team (PACT) also helped Olivia and Rob move forward. PACT helps families and children with complex conditions through difficult medical decisions.

“We knew that if things turned out to be a worst-case scenario, we had the resources there to support us,” Olivia said.

Olivia and Rob took the rest of their pregnancy day by day. Between their continuous research and questions, they received support from a community of friends and family. 

“We weren’t always in the headspace to keep an optimistic attitude,” Olivia said. “They lifted us up when we needed it the most.”

As Olivia’s due date approached and their baby’s condition seemed to be getting worse, the final MRI brought better news. It revealed Olivia and Rob’s baby actually had a moderate to mild CDH classification—meaning a better chance of survival and a decreased likelihood of needing extracorporeal membrane oxygenation (ECMO), which is a form of life support for babies with severe heart and lung conditions.

Holidays in the Hospital

Olivia and Rob planned to deliver at the Special Delivery Unit at Cincinnati Children’s Fetal Care Center, which is designed to provide specialized care for babies with complex conditions like CDH.

A week before Christmas, the couple welcomed their son, Helio. He was quickly transferred to the newborn intensive care unit (NICU), where a team of CDH specialists stood by, ready to help stabilize him. The task turned into a bigger challenge, though, when Helio’s condition took a turn for the worse.

“Even though it wasn’t our first choice, we were prepared to put [Helio] on ECMO,” Olivia said. “You can plan all you want, but it’s ultimately going to be up to how the baby is doing.”

ECMO adds another layer of complexity, Dr. Kingma said, adding, “We had to act quickly. We didn’t want Helio to become stressed and put him on the machine when he was in worse condition.”

Luckily, the care team succeeded in stabilizing Helio with a milder form of lung ventilation called an oscillator—updating Olivia and Rob every step of the way.

“All the doctors and nurses provided such great care—before, during and after birth,” Olivia said. “They made our experience positive despite the circumstances.”

Milestone After Milestone

Nine days after birth, Helio had surgery to repair the opening in his diaphragm and move his organs back into place. He also had a nasogastric (NG) tube inserted through his nose and into his stomach to provide nutrition.

As the seventh patient to go through the revised CDH program, Helio had opportunities to thrive, Dr. Kingma said, emphasizing that when it came to the new care approaches, sometimes less is more.

“Our new feeding protocol is actually slower than how we used to do things, but the babies end up reaching full feeds faster,” he said. “That was evident with Helio. He was taking full feeds into his belly 11 days after surgery.”

Helio also came off the ventilator much more quickly than previous patients, Dr. Kingma said, noting the milestone used to take three to four months to reach on average.

Helio’s progress paid off. Olivia and Rob expected to spend four to six months in the NICU. To their amazement, they were able to come home after a little more than two.

“It was such a big relief to come home early,” Olivia said. “Since Helio had an NG tube and would be on oxygen full time, the NICU team trained and prepared us for what life would look like with a kid who needed a little extra support. We felt comfortable and confident going home.”

Two months later, Helio began transitioning from his NG tube to oral feedings, a major achievement for kids with CDH.

While Oliva and Rob continued to help Helio grow stronger, they hit a bump in the road that summer, when scar tissue buildup led to a bowel obstruction. Because it was a potential complication Olivia and Rob had been told could happen, they knew what to do, and immediately returned to Cincinnati Children’s with Helio for a second surgery.

When Olivia and Rob learned Beth Rymeski, DO, the NICU surgical director who performed Helio’s first operation, would perform the second procedure, too, they were thrilled.

“The Cincinnati Children’s team is just so on it,” Olivia said. “They make sure you’re prepared for any complications and are right there to help when you need them.”

Soon after his surgery, Helio reached another big milestone: He took his first breath of fresh air without oxygen in the courtyard outside Cincinnati Children’s.

A Bright Future

Today, Helio is fully healed and thriving. At just over a year old, he’s now standing, talking, making silly faces and doing all the things babies love to do. He also has an older brother and sister to learn from as he grows.

“He might need a little extra help with endurance and breathing, but we don’t focus on that,” Olivia said. “Unless you see the scars on his belly, you wouldn’t know he went through all this in the first year of his life.”

Olivia and Rob always knew their baby would be a fighter. He was named after Hélio Gracie, a Brazilian martial artist. His name also means ‘sun,’ a testament to the light he’s brought to their lives.

“He’s our little sunshine,” Olivia said. “Cincinnati Children’s made him the center of their world, just like we do.”

(Published March 2025)