Jude's Story - Congenital Diaphragmatic Hernia (CDH)
Our story began like so many others. We went into our 19 week ultrasound with our main concern being whether or not the tech would remember that we wanted the gender to be a secret, and left that day with the knowledge that our baby may not survive. We spent the following weeks researching CDH, survival rates, in utero procedures, specialists...anything under the sun we could find. We visited a fair share of doctors and were given the option, on multiple occasions, of termination, to which we vehemently refused time and time again. By then we had relented and learned the gender, as well as everything else we could in the amniocentesis, and we were told that he had a 10-30% chance of surviving.
He had a left side diaphragmatic hernia, and his stomach and liver were in his chest cavity. He was missing half of his diaphragm. This was a devastating prognosis. We felt there had to be more options and with continued searching, we found Dr. Kays. After a consultation at 28 weeks, we knew immediately this was where we needed to be when our son was born. Dr. Kays told us our son DID have a chance of surviving, and an 80% chance at that. We traveled to Gainesville, FL at 38 weeks gestation and moved into the Ronald McDonald House to wait for our induction. At 39 weeks and 3 days, Jude Patrick came into this world. Weighing a healthy 8lbs 2oz, he was immediately intubated and rushed out of the delivery room. We got to see him 6 hours after birth, and within the first 24 hours he had his CDH repair surgery. He made it 24 hours after that, and was then placed on ECMO. He was on ECMO for 8 days. Jude was extubated after 16 days, and on the CPAP for 1 day. He was then on just oxygen (which continued until he was almost 3 months old).
We got to hold our son for the first time when he was 17 days old. The rest passed in a blur, which was good for us because it meant no major hiccups. Jude surpassed all the odds against him, had no feeding issues (other than moderate reflux), and after 37 days in the NICU, we were able to bring our miracle home. There isn't a day that goes by when we don't thank our lucky stars for the gift of our CDH baby. We were so blessed to find Dr. Kays, and we truly believe that we made a life changing choice for Jude when we decided to put his care in Dr. Kays' hands. Now, Jude is a thriving, smart, funny, healthy 7-year-old and nobody would ever know the trauma he went through. He runs, plays, swims like a fish, eats any and everything, and keeps up with his 3 brothers every minute of the day. He is our miracle.
Update:
Jude has continued to thrive through the years, doing great at school and even trying out soccer and swimming (the things we never imagined possible!) He is turning 12 next month and starting middle school this upcoming school year. We are so proud of him. Thank you, Tiny Hero’s, for what you do for CDH families. I wish we had the support and optimism of an organization like this when Jude was born!