Kaisen’s CDH Story
When I was 20 weeks pregnant at my anatomy scan, we found out the news that Kaisen had Congenital Diaphragmatic Hernia (CDH) on the left side.
I was then transferred to Baltimore, Maryland, for a better look. We were told that Kaisen had less than a 50% chance of survival. They wanted to do a lot of tests on me and him while I was pregnant.
Later on in the pregnancy, we found out it was a mild to moderate case, so that we could go to a more local hospital at VCU Health for further treatment and delivery. He then had a 50-70% chance of survival with the help of machines breathing for him.
He was born at 34 weeks and immediately put on a ventilator. He had chest tubes put in to drain all the fluid he had inside his body. It was a rocky few days trying to get him stabilized for surgery. He couldn't get stabilized, so they had to do the surgery anyway because they were running out of time.
He finally had the surgery when he was 5 days old. He didn't need ECMO, but he was on the highest setting of the ventilator, with more chest tubes, and more.
He had to have daily chest X-rays and ultrasounds of his lungs, as the left lung was smaller and wasn't getting better like they thought it should. While struggling with breathing, oxygen levels, and feeding, he wasn't making the progress he needed to make.
After a month, he got off the ventilator and was put on a CPAP machine, which he did great one. So they took him off the CPAP and put him on high-flow oxygen.
He struggled on the oxygen because every time they thought they could lower it, he couldn't handle breathing with lowered oxygen. After 2 and a half months, he got to where he could breathe on his own, but now wouldn't eat by mouth. We all worked hard with him to eat by mouth. He would eat a quarter by mouth and the rest by the NG tube.
Finally we got him to eat half of his feedings by mouth and half by the tube. And we were working on him to come home to work on the feedings.
After 3 months, he came home with an NG tube because he couldn't take all of his feedings by mouth. He got off the NG tube a week later and takes all his feedings by mouth.
Today, he is a happy little boy who will turn 2 soon. He is definitely my little CDH warrior, my little fighter. This boy was fighting hard for his life and deserves all the happiness he has today.
