Kash’s CDH Story
On January 22, 2024, we went in for what we thought would be a routine 20-week ultrasound for our first baby. We were so excited to see better images of the developing baby and confirm it was a boy. While the tech was getting images at our local hospital, she paused and said she would need to go get the physician on call to come get a better look. At the end of our visit, we spoke with the physician who told us our baby boy either had CPAM or CDH, either way, there wasn’t much hope for a baby in that condition and then asked us if we would like to terminate. There was no condition where we would terminate our sweet baby boy so we were referred to my work, the University of Michigan- Mott. At 24 weeks, we had an MRI, amniocentesis, ECHO, and an ultrasound to confirm our baby had severe right congenital diaphragmatic hernia (CDH). We left the appointment in complete heartbreak. How could we be experiencing such a challenging pregnancy for our first baby? How could we survive adapting our lives to this new reality? When discussing our treatment plan at Mott we were once again asked if we would like to terminate and were told our baby would have an extremely hard time fighting to live with close to 60% liver up, less than 20% lung volume, and, his heart pushed completely over to the right. There wasn’t much hope and a very high chance he would need ECMO and would need a feeding tube and oxygen. We were told we would graciously have a 50% chance of survival.
It took us a week or two to soak in that potentially what the next nine months would be like. We were discussing how we were so heartbroken and there had to be someone in the country or even the world that has devoted their life to CDH and could give our baby a better chance at life. We researched and came across Dr. Kays in St. Petersburg, FL at Johns Hopkins All Children’s Hospital. We quickly called their number to see if we would be able to schedule a consult and two weeks later we found ourselves down in FL, getting a third opinion. Dr. Kays discussed our son's condition in depth, and gave us a harsh reality check that our son would have to work extremely hard to make it but that he would do everything he could to give our son the best chance of life and the best quality that he could. We left feeling optimistic despite knowing how severe our baby's case was. Dr. Kays gave us a 90% survival rate and 6 weeks later we packed up our car, left our animals and home, and temporarily moved to St. Petersburg for what ended up being 104 days.
Our son, Kash Jay Orlando Gibson was born on May 28, 2024, via a scheduled c-section. He was a healthy 7 pounds 13 oz and 20.5 inches long. He was so beautiful! However, we only got to see him for a few seconds before the team whisked him away to intubate him and put him on ECMO. Kash was placed on ECMO at 13 minutes of life and was on for 16 days. He was intubated until he was 30 days. I held for the first time at one month old. It was an incredible moment for both mom and dad. Kash learned to love to eat via bottles and never needed a feeding tube. He was in the CDH unit for 70 days and came home on a low dose of oxygen.
Now at four months old, Kash is advanced in neurological function and physical, he can roll from back to belly and belly to back. He giggles and makes the sweetest faces at anyone who will watch. He loves to track everyone and make silly noises. He acts like a baby who was never hospitalized for 2.5 months and was never on ECMO/intubated. We have a wonderful team and physician to thank as well as an amazing God who guided us throughout our entire journey. Kash has the devoted backing of family and friends “Kash’s Krew” who gave us unconditional love and support while being so far away from home.
We are blessed to have a strong RCDH Tiny Hero!
