Congenital Diaphragmatic Hernia Program

Patient Stories | Jesse and CDH

It was a date Marisa and Jared Clark had been looking forward to for months. Marisa was 21 weeks pregnant with their first child, and they were anxiously awaiting scan results to learn their baby’s gender. Friends waited to hear the news and a celebration dinner with family was planned for later that night. 

But when the ultrasound revealed more than just their baby's gender, what began as a day filled with excitement and anticipation swiftly transformed into worry and uncertainty. 

The doctor told Marisa and Jared their baby had a congenital diaphragmatic hernia (CDH)—an opening in the diaphragm, which is the muscle that helps with breathing and separates the chest from the abdomen. 

“It was all very quick,” Marisa said. “We were told it wasn’t something our doctor’s office could help us with, but that we’d learn more at an appointment they’d make for us in two days with specialists in their network. Just hearing that news, though, was extremely overwhelming. We both started crying. We needed time to process the information.”

Marisa and Jared decided to share with their family and friends that they were having a boy but, for the time being, keep to themselves the news that he’d be born with a serious birth defect. “We clung to hope, and we clung to our faith,” Marisa said.

At the specialist appointment later that week, Marisa and Jared learned more about their son’s diagnosis—specifically that the opening was on the left side of the diaphragm and that his case was likely to be moderate to severe. They also learned that CDH occurs when the lung and stomach tissue don’t form correctly early in pregnancy, leaving a hole in the diaphragm. Because of the hole, the baby’s abdominal organs—including the stomach, intestines and liver—move up into the chest, leaving little room for the lungs to grow and develop.

The specialist recommended they transfer care to Cincinnati Children’s.

“We knew that Cincinnati Children’s is the No. 1 hospital in the country,” Marisa said. “And Jared has a brother who was adopted from China and receives monthly transfusions from Children’s, so we were familiar with them and how great they are."

Making a Plan

At their first appointment with Cincinnati Children’s Fetal Care Center a few weeks later, Marisa had a more in-depth ultrasound and an MRI.

“We were told our son’s condition seemed more on the severe side, but they’d do another MRI in a month and weekly ultrasounds to be sure,” Marisa said. When a second MRI two months later confirmed the diagnosis was actually mild to moderate, Marisa and Jared were “overjoyed.” 

Now that they knew what to expect, and with a plan in place to deliver at the Special Delivery Unit—a birthing center at Cincinnati Children’s Fetal Care Center dedicated to providing immediate care for patients with complex fetal conditions like CDH—Marisa and Jared decided it was time to tell their loved ones the news. It was a month before Marisa’s due date.

“Because we waited, we were able to answer most of their questions,” Marisa said. “It ended up being very helpful.”

Marisa and Jared’s son, Jesse, arrived in August 2023. Although he was immediately transferred to the neonatal intensive care unit (NICU), and even though Marisa knew what to expect, she was overwhelmed when she was cleared to visit Jesse a few hours after delivery and found him hooked up to a number of large, noisy machines.

“They wheeled me over in a wheelchair,” she said. “There were so many emotions involved with seeing my baby for the first time, but also with seeing him surrounded by so many machines and people. There were so many noises and faces. There were people congratulating me but also updating me on what was going on.”

CDH specialists in the NICU intubated Jesse right away and placed him on a ventilator to help his breathing. Five days later, Jesse had surgery to repair the opening in his diaphragm. The procedure took about eight hours, with the goal of moving the abdominal organs into their correct positions and patching the diaphragm.

Jesse struggled with reflux and gaining weight initially, and he suffered from a few infections and medical scares, but eventually, he started doing better. Marisa and Jared set a goal of taking Jesse home by Christmas, and worked with his doctors, nurses, and therapists to learn what care Jesse would require once he left the hospital.

“The nurses at Cincinnati Children’s are amazing,” Marisa said. “It was nice to get to know the nurses and learn about their kids and families and what they did that weekend. It helped it feel a little more normal.”

On Dec. 22, 2023, after over 130 days in the NICU, Marisa and Jared were able to take Jesse home. Three months later, they took him to the Cincinnati Zoo—something they’d been dreaming about for a long time.

“Jared and I had walked to the zoo a few times from the hospital, and we’d always see people with babies and longed to be there with our son, so finally getting to go as a family was a full-circle moment for us,” Marisa said.

A Growth Mindset

One of Jesse’s doctors, Paul Kingma, MD, a CDH specialist and director of Cincinnati Children’s Bronchopulmonary Dysplasia (BPD) Center, says that Jesse’s outcome is just what he’d expect.

“It’s our job to fix the little things that are broken and try not to mess up all the normal baby stuff,” he said. “With Jesse, we fixed the things that were broken and let everything else in Jesse continue to grow and develop. In the end, despite some difficulties, I think we were successful with him. He’ll grow up to be a happy and healthy little boy running around the house, the zoo, and doing the things that every little boy does.”

It's part of the CDH Program’s less-is-more approach to treating kids with the condition. 

“We strive for less ventilation and less sedation and less intervention, in general, whenever we can,” Dr. Kingma said. “We want to give these kids the time and room to grow, so we protect their lungs as much as possible. We know that gives them the best chance for long-term success. But we also recognize when they need additional support, and we act quickly.”

Trusting your care team is a piece of advice Marisa wants to share with other parents: “Know you’re in good hands, try to be as involved as you can, but also remember that every baby is different,” she said. “We’re very fortunate that Jesse has a positive story. I know that’s not the case for everybody. I hope parents have hope, though. These babies are so strong, and they’re such fighters.”

(Published May 2024)