A Summary of the Beginning of Our CDH Journey

April 27th, 2009

As Gene and I got in the truck to go to our 17 week ultrasound appointment, I told him that I was so excited and I just wanted to completely live in the moment. I knew from being in healthcare that many people experience problems and there are many sad and challenging things that can happen during pregnancy, but we had no reason at that point to believe that we would have to go down that road ourselves. I told Gene that if it all changes after our ultrasound, let me be really happy and excited for right now. Little did I know how much our lives would drastically change just one hour later.

Andrew was so active during the ultrasound that the technician had trouble getting some of the pictures at first. We had to laugh when we saw him playing with his toes and he was not shy about letting us know he was a boy either! Gene and I kept thinking, "wow, they sure do take a lot of pictures", but we really had no idea that there was anything wrong. After the technician left the room to review everything with the doctor, she came back in and said that she did need to get some more pictures and that the doctor would be in shortly to speak with us. I think I honestly felt my heart drop to the floor in that moment. I knew that something was very wrong, but I had no idea what it was until the doctor came in to speak with us.

The doctor explained that Andrew had a hole in his diaphragm which was allowing his stomach and intestines to remain in his chest cavity. The problem with this is that his lungs would not have room to develop properly. They gave him a 70-80% chance of survival since we are at Duke ( the national survival rate for this defect is 50%) with a 50% chance of requiring ECMO which is the lung/heart bypass machine. He would likely remain in the NICU for several months if he survives. They told us that other defects and syndromes are very common in babies with CDH and scheduled us for a fetal ECHO at 23 weeks to look at his heart. They offered to do an amniocentesis and to terminate the pregnancy which Gene and I refused. Terminating the pregnancy was not an option for us and the amniocentesis would not help Andrew in anyway and had risks of miscarriage involved- I wanted to give Andrew every fighting chance at survival!

I had taken care of babies on ECMO before and knew that kids are very resilient and can really surprise you when you are thinking the worst. I have also taken care of kids who have unfortunately not won their fight to survive and have held them as they died when their parents could not make it or it was too hard on them. I was begging God at that moment and still today to let Andrew be one of the ones that survives and has a good quality of life! With everything in me, I want him to survive and win this fight against CDH!