In January 2002, we moved to Salt Lake City from St. George, Utah to have our son. He was diagnosed with CDH during a 22 week ultra sound. He was born at University of Utah Hospital and transported to Primary Children's Hospital. In extremely critical condition, we almost lost him on day 3. Our ECMO team were consulting with the team at CHOP all day. Blood waiting, ECMO in the room. By some miracle that can not be explained by doctors, he didn't die that day, nor did he have to go on ECMO. On day 5 he had his first repair. His defect was significant. His surgeon said his diaphragm was "almost completely absent" and had to use a large Gore-Tex patch for the repair. Then, by other miracles, we were on our way home on day 28! Adjusting to life at home was brutal. Tyler was taking meds every 2 hours and was on oxygen for 11 months. At 4 months old, our biggest fear came to life. Tyler's large Gore-Tex patch failed and he had re-herniated. Transported back to Primary Children's (320 miles from home) and we had to start all over after his second repair. It was devastating. Through a series of more miracles and re-writing medical books along the way, we were going home after a short 14 days. Tyler is incredible. His spirit is beautiful. He is kind and loves to give service. He is now a strong 14 year old "boy"! He's as big as his dad! 5' 10" and wearing a men's size 14 shoe! He is one step away from becoming an Eagle Scout and is the best brother our 3 daughters could ever ask for! When I hug him, I have to reach up, but I still feel like he's my baby boy. I still see him as that sedated, intubated and scarred up newborn sometimes. I'm so excited to see where his life goes! He is destined to big things! I want to thank everyone at CHERUBS for the love, support and close friendships we have developed over the years! We are lucky and had a high risk pregnancy specialist tell us about CHERUBS on the day we got his diagnosis! We have never felt alone or directionless. What a blessing! Lots of love and hope to everyone effected by CDH.
Tyler's story was written by his mom, Hope Clyde.
No comments:
Post a Comment