At our 21 week scan, we found out that our son had a severely underdeveloped heart. His left side of his heart was significantly behind in growth compared to his right side. We prepared for the worst. When we went to CHOP for a echo cardiogram in utero, Kyle was diagnosed with aortic arch hypoplasia, which was causing his left side of his heart to not grow at the same rate as his right side. We we’re monitored by the Fetal Heart Program and delivered Kyle at CHOP Special Delivery Unit on May 10, 2018.
Kyle had heart surgery 4 days after birth for aortic arch hypoplasia. This surgical intervention was supposed to allow for his left side to grow into its right sides size and functionality. . Kyle spent 36 days in CHOP cardiac intensive care unit due to complications he faced after his initial surgery. We are beyond thankful to the entire team every day that we have with Kyle home with us and thriving, thanks to them.
He loves to have dance parties in our kitchen, plays soccer, and is the ultimate CLASS CLOWN at daycare, with a special heart of gold. His best friend is his sister, they are two partners in crime, and he is such a funny and smart little 3 year old now!
Being a member of the CHD world, you grow to admire certain people who are in the same situation as you are in.
PJ Fleck, a college football coach, and fellow CHD parent, lost his son’s life to CHD. His mantra that he has developed has become a staple in our household, and I hope it can do the same to those in Kyle’s life.
“It’s a never-give-up mantra that has to do strictly with life or adversity or handling success, never giving up, and it means a few things. When you row a boat, you’re rowing, don’t ever look at me and paddle. That’s completely different. We’re rowing. Your back is to the future, which is something you cannot control, nor can you see. You have to trust the person in front of you, that you’re looking at, that they’re doing their job and rowing at the same speed, same efficiency as you are. But that’s the future, you can’t control that. You don’t know if there’s rocks, water falls, stormy seas, you don’t know what’s ahead of you. You’re rowing in the present, which is the only thing you can actually control, and the only thing you can actually have an impact on. You either choose to take your oars and put them back in the boat and stop, or you put them back in the water and continue to go. But you’re looking at the past, which is the only thing you can actually learn from. But you can’t change.”- PJ Fleck
We are here to help row the boat, for CHD, for Kyle, and for the research ahead still to be discovered. Keep rowing the boat with us kid, we love you!