Colt's CDH Story - LCDH

On December 18th, we found out with all our family that we were having a boy. We were so excited to see our baby a few weeks later at our anatomy scan. The ultrasound tech showed us his feet and face. She never made us think something was wrong. We still had to have the results given to us by an OB. We waited forever in the waiting room. I was so irritated to wait so long, just for them to tell us everything was good, and we could be on our way like every other appointment. They finally called us back. The doctor told us he had a 2-vessel umbilical cord, his stomach was in his chest, and his heart was on the wrong side. She was so nonchalant. He'd just need a surgery after he was born. She didn't even give us an idea of the real horror CDH is.


A week later, we had a follow up appointment with MFM. They did another ultrasound and confirmed left sided CDH. Even though we went in knowing he had CDH from doing our own research, they gave us the official diagnosis. They also suspected he had Downs Syndrome, so we had an amniocentesis done that day. Colt was a perfect candidate for FETO, and we wanted that option if that was the path we chose.


Through talking to other families and doing our own research, we had narrowed our options to CHOP and Dr. Kays. After talking to Joy, we knew Dr. Kays was our best chance. On April 24, at 34.5 weeks, we relocated 12 hours to St. Petersburg from Virginia. We had ultrasounds, a MRI and an echo done in St. Petersburg. Colt's heart was perfect, just pushed to the far-right side. He had 20% of his liver up and 20% of his left lung. 4 weeks after moving, we went in for our induction. After 2 doses of cervadil, Dr. Kays decided he wanted Colt to come the following day. The next morning, they started Pitocin. Colt was born an hour later on May 25. I was so worried, I couldn't stop shaking. Colt was born fighting. He let out a little cry and fought the intubation. I was able to get a very quick look at him before he was taken to the CVICU. They had trouble putting in his umbilical line, so they had to do a procedure to get it in. When that was finished, I finally got a better look at him. Such a beautiful baby! He was his sister's twin.


I was honestly afraid to be around him those first few days. I didn't know what to expect. All the wires and beeping is so intimidating, and I didn't want to be there if everything went downhill. Around the 24-hour mark, Dr. Kays told us he had gotten through the honeymoon phase and would likely start to decline within the next 24 hours. At 2 days old, almost exactly, he was put on ECMO. The following day, he had his repair surgery. His surgery took longer than planned. He bled more than they expected. And his organs were more swollen from the ECMO, so Dr. Kays had to put in an abdominal wall patch to make everything fit without it being too tight. He had 30% of his liver up and 40% of his left lung. It was just a little nub. He had a 90% defect where his diaphragm didn’t form properly. After 9 days on ECMO, he came off. I got to watch, which was a cool sight to see. Two weeks after repair, he started throwing up bile. Dr. Kays decided it was best to go in for another surgery. He had scar tissue on his bowel causing an obstruction and had the abdominal patch removed. After that, we had smooth sailing. He was extubated at 26 days. Because of his UAC having to be removed and heal, we weren't able to hold him for 2 more days. But when that wait was over, what an amazing day that was! The next day he started feeds. He picked it up slowly, but once he got the hang of it, we couldn't stop him! He tricked his nurses into feeding him, so that he would be held. After 52 days in the hospital, we finally got to take him home! He came home without oxygen and only a couple medicines.

After coming home, Colt has thrived. He was cleared by cardio. He's gained weight like a normal baby would. He's on normal well baby visits without weight checks in between. At 5 months old, he's already sitting up on his own.

We started this journey not knowing what to expect. We feared the worst. We didn't know if our son would live or die. We had trouble getting excited and having a normal pregnancy. But we learned that CDH isn't a death sentence. There is so much hope!