Elijah’s Story - Congenital Diaphragmatic Hernia (CDH)

Everything was going as planned with the pregnancy. At 20-weeks, the ultrasound indicated to the doctors that the baby had clubbed feet (which was something I'd never heard of and can be treated after birth). They asked me to consider abortion, but I would never do that. They did further genetic testing, a blood test, and an amniocentesis. Everything came back normal. We did a heart echo, and it was normal as well. When we got to the 30-week ultrasound, they saw that the baby's heart was shifted a little, so the doctor monitored it for a week. Then, he diagnosed him with CDH (Congenital Diaphragmatic Hernia-which is a condition that is not genetic, just a random mutation where the baby will have a hole/underdeveloped diaphragm). A person needs the diaphragm muscle to aid in breathing and separate lungs from other organs. In Elijah's case, it affects his right side. The hole allowed the liver to move up into his chest, and it pushed against his right lung, causing it not to grow properly. They can fix the hole with mesh, but the right lung will always be small, and he will have some limitations with activity as he grows. There's always the chance he will develop another hernia as well, just with growing or if he is injured.

Then, they proceeded to tell me he had a 50% chance of survival. We waited anxiously for his arrival. At 36 weeks, I went in for an ultrasound at my regular OBGYN because I didn't feel him move very much. At that time, they didn't see him move much on ultrasound either and immediately sent me to the USA in Mobile. Once we arrived at the USA, they had prepared me for an emergency c-section, but that wasn't in God's plan. I was discharged and left for Birmingham because I knew I had to deliver at UAB. On the 23rd of September, I started having some painful contractions, and I walked to the hospital to be checked out. I never left the hospital. They did a c-section (my first) and got him out pretty quickly. Elijah was born at 8:11 pm. He weighed 6lbs, 6oz, and was 20.5 in tall. They rushed him over to the children's hospital, where they put him on a breathing tube. He did well on it for a little while, then he started having trouble, so they called me while I was recovering in the other hospital and told me they have to put him on an ECMO machine. It would do the work for his lungs and heart (so they can get a break and let his body heal). On the following Monday, the 28th, they did surgery to pull down his liver and close off his diaphragm to give his lung a chance to develop. During the surgery, his liver was bruised, and this caused extra bleeding in his abdomen. The doctors had to put packing in his stomach and a vacuum to help the blood drain out. On Wednesday the 30th, they removed some more of the packing. On Friday, the 2nd of October, they removed the rest of the packing but left the stomach open to make sure there was no more bleeding. The doctors plan to close the stomach up completely on Monday the 5th.

Looking forward to the future, Elijah has a long road ahead of him for healing and growing. He's already made it through his diaphragm repair stage, so his next step is just to see how he does as he heals. Of course, he will also need to fight off infections, allow his organs to function normally, and learn how to breathe on his own. He will then need to work on feeding since he won't have eaten anything using his mouth for quite a while. Eventually, we will seek therapies for his clubbed feet and hands, but that's a way down the road after his vital organs are healed and functioning correctly. We are looking forward to the results of some other tests he has had to see if some of these issues point to another syndrome or diagnosis. We hope those results will provide us with the answers we need to help Elijah live his life to the fullest. We love him so much!