Noah's Story - Congenital Diaphragmatic Hernia (CDH)

Expecting your first child is such an exciting time- and my husband & I were like any other first time parents, planning a nursery, names, and so on. However when I was 31 weeks pregnant with Noah, we received the news that there was something terribly wrong. It started with a migraine (which isn’t a rare occurrence with me), but this one was extremely bad, and while at a doctor’s appointment our family friend who was with me asked if my stomach hurt as well because she could see it contracting. I was immediately taken to my OB to discover I was having contractions one minute apart, a fast ticket to being admitted at Baptist Hospital in Jacksonville. Within hours we were told there was something wrong with Noah. Hours led into days of testing and mis-diagnosis, until finally we were seen by the high-risk doctors, telling us he had a congenital diaphragmatic hernia.

We hadn’t heard of CDH before, and our local hospital wasn’t equipped to treat it. In fact, if we chose to have Noah delivered there; he would have been the first child on ECMO. The doctors then told us about Dr. David Kays, not too far away in Gainesville. We made an appointment with Dr. Kays for the next day, and after meeting with him was told I couldn’t return to Jacksonville since the risk of Noah coming was too high and he wouldn’t survive transport. We were told he had a right-sided CDH, but with Dr. Kays survival rate we felt like God has brought us to just the right place. The next six weeks included several trips to the L&D ward with contractions and high blood pressure, but we also saw God moving in his tiny body. At one OB appointment there was fluid around his heart, and after asking our church body & friends to pray, the next visit showed the fluid had vanished. Noah was delivered via C-section at 37 weeks. I’ve never seen so many doctors and nurses in one room, but was confident in the team that Dr. Kays had put together to help Noah. He was immediately put on a ventilator and whisked away to NICU. Noah was much sicker than Dr. Kays initially thought, and on his second day of life was placed on ECMO. I will never forget Dr. Kays coming into my hospital room as I was signing the birth certificate to tell me he was just being a “little pooper” and not responding well. After 6 days on ECMO, Noah had his corrective surgery at 9 days old. Noah had a sac as well that helped keep his organs from going too far into his chest. He ended up with half of a right lung, and 80% of his left.

From then on, he progressed so well and was able to go into the step down NICU. After over a month in NICU, we brought Noah home on oxygen with no other complications. We are so thankful to Dr. Kays and his team and how God used them to save Noah’s life. When Noah was 3, we had our second son who was completely healthy, and Noah is a wonderful big brother. He has thrived and done everything other children his age do. He is now an active (almost) 10 year old who loves drawing, writing, and sports. He brings joy to every room he enters with his spunky and funny personality, and we pray that his story will help others facing the same diagnosis.