Oliver’s CDH Story

We found out that our baby boy Oliver had several red flags, not just CDH, at our 20-week anatomy scan. The doctor didn't know exactly what was happening, but we were told the left ventricle of his heart was small, they couldn't find his stomach, and he was measuring several weeks behind on growth. This appointment was devastating and a complete shock. My pregnancy was going perfectly smoothly up until this point. We were then referred to an MFM doctor for a higher-level ultrasound, who told us our son had a long list of heart defects, including Hypoplastic Left Heart Syndrome (HLHS). After seeing a cardiologist a few days later, she confirmed it was not what they had told us. She mentioned that it was "just a hernia" near the lung, which would be repaired after birth in a minor surgery. We left that appointment feeling optimistic and relieved.

After doing my own research, I soon discovered that what she meant was a congenital diaphragmatic hernia (CDH). I realized that this was not better news and that it definitely wasn't JUST a hernia. I am so thankful for discovering Tiny Hero and support groups on Facebook. So many amazing people helped guide us on our journey. After much thought and guidance from others, we ultimately transferred to Dr. Kays in Florida.

After prenatal testing with Dr. Kays’s Team in Florida, we discovered that Oliver had a very severe case of CDH. Also, on top of having a severe case of CDH, he was measuring very, very small on ultrasounds. He also had a VSD and possible coarctation of the aorta. All genetic testing done before birth came back negative. We were told Oliver would have an 80% chance of needing ECMO when he was born. He had left CDH with stomach, spleen, bowels, and 45% of his liver in his chest. His heart was pushed all the way to the right side of his chest as well. Dr. Kays gave us a 90% chance of survival IF Oliver was born big enough to be put on ECMO. We knew our chances were slim if he wasn't big enough for ECMO when he was born. I also had resisted flow in my placenta, so the risk of early labor or stillbirth was also much greater. It felt like everything was against us, but I knew we were in the best hands and giving our little boy his best shot.

Oliver was born at 37 weeks and two days, weighing just 2 pounds, 14 ounces via a planned c-section. He came out even smaller than we expected and what he measured on ultrasounds. We were beyond terrified when his weight was announced after birth. I thought they must have meant 3 pounds 14 ounces, but he was indeed 2 pounds 14 ounces. Just a few minutes after birth, the doctor came to us and told us that they were able to intubate him successfully and that he was actually doing rather well. It was truly a miracle! After birth, we also found out that Ollie had esophageal atresia/tracheal fistula (EA/TEF), a large VSD, and coarctation of the aorta. Oliver had his CDH and TEF repair surgery at one week old. We were close to losing him after surgery, but he responded well to nitric oxide and surpassed the need for ECMO again. After surgery, we spent a very long few months trying to get Oliver to grow. Ollie had several Brady/desat events and coded twice. We were so close to losing him so many times over these months. He also had several different infections. Every time, Ollie showed us how strong he was and pushed through every obstacle thrown his way.

Ollie had another surgery in April to ligate his PDA and band his pulmonary arteries. He developed severe tracheal malacia and had a tracheopexy done in May. We were fortunate to be at JHACH, where we not only had Dr. Kays but also Dr. Smithers, who is an expert in airways. Oliver was still unable to extubate after his tracheopexy surgery at five months old. Finally, Oliver underwent open heart surgery at seven months old to repair his VSD and COA. Just three weeks after surgery, Oliver was extubated successfully for the first time. It was a very long eight months leading up to this point! Since being off the ventilator, Oliver has been doing amazing and is a different baby. He was discharged from the hospital at 8.5 months old on September 18, 2023.

Ollie still needs surgeries to repair his esophageal atresia, which Doctor Smithers will do early next year at JHACH. I am hopeful that our complicated and rare journey can help someone someday! Oliver is one in a million and truly a miracle! We feel blessed to have our baby alive and thriving. I am so thankful for the many people and doctors/nurses who have helped us along this crazy and stressful journey.