The Ganoe Family

Initial Backstory

"When we first learned I was pregnant me and my partner were over the moon, we were thrilled every doctors appointment, from seeing him on the first ultrasound, to hearing his heart beat for the first time, and finding out we were expecting a baby boy! Everything changed so fast when I went in for my 20 week ultrasound and getting a phone call the following morning to learn our child had CDH it was all new I wasn’t even sure what CDH was or if i had done something to cause it. My doctor told me it was life threatening and immediately sent us to a hospital in Danville. at that appointment there was talk of termination which I did not see as an option, after getting no real answers and being told they couldn’t help us we were referred to the Children’s Hospital of Philadelphia. We had appointments there monthly learning about all the risks and complications that come with CDH, luckily we had a great team of doctors and nurses who helped us through every step. I learned that i would have to relocate to philadelphia at 34 weeks. I wasn't able to work, and relied on my partner and family to make ends meet back home, nearly 200 miles away alone in a city i didn’t know. When Kayson was born he immediately needed respiratory support and then was put on ECMO. He had his repair surgery about 12 days later while still on Ecmo. He was eventually able to come off of Ecmo and later able to come off the ventilator! He is currently on a CPAP machine and is starting on feeding tubes! It has been an incredibly hard journey to go through but watching him get stronger each day makes it all worth it. We are so proud of how far he has come and know he still has a long journey ahead of him but we never imagined we would get to this point and it has been well worth the wait!"

Update 8/2/2026

"Kayson has now been on cpap, and he is not a fan at all poor guy. The nurses have been working to wean him off the cpap, which has been a very slow process but baby boy has made so much progress, he’s now getting breaks from the big bulky mask to little nasal cannula cpap to give his face a break, so far he has been doing really well with it and i love being able to see more of his face finally! they have also been working to wean him off of medications which has been a struggle, we’ve had a few ups and downs but right now he’s tolerating it pretty well! He has also been on feeding tubes, they had to move his tube further down past his stomach into his intestines but he’s been doing great and you can tell, he’s already up to 13 pounds! I’m so proud of how far he has come this past month"