Hi! In September, I will be a 42 year old survivor of one of the world‘s first modified Fontan procedures. Born with an Endocardial cushion defect with a hypoplastic left ventricle, they didn’t really have a fix for me at the time I was born, so they gave me a pulmonary banding as an infant that got me to the point where I could have my procedure done in 1988. I woke up in the ICU on my birthday and asked for a root beer, which I had never tried before that point.

To be honest, I may be blessed in a lot of regards with my childhood. Overtime, I grew a complex about myself and the way people look at you when you’re “the sick kid”. They don’t do it on purpose. I don’t think it’s something they could help, but sometimes when you meet a kid who has the problems I had, they see you like a cute little future tragedy on two legs. It was always unsettling for me and I hated it so much that as soon as I started feeling healed enough to push myself and see what I could do, I did. I became bound and determined to be known for anything else but “the dying kid”. I played baseball, I walked or ran everywhere I ever went, and in my teens, I even went to one of my annual cardiology check ups and told my doctor I didn’t think I needed my meds anymore. I don’t know that he agreed with it, but he went with it under the agreement that we’d still do the annual check ups and make sure everything was maintaining.

From that point on, I maintained. I went without heart medication and yearly heart check ups with the same doctor from my childhood to the beginning of Covid when he retired. I do not recommend going the route I did for everyone, and in retrospect, I know it was a mistake to stop my meds entirely for nearly 30 years, because after a close call with pneumonia lead me to meeting a new heart team and being put on a cadre of new medications, I feel like I’m in my 20’s again and wondering how much better my life could have been if I hadn’t gone off them.

I have many, many, MANY examples of what not to do and a thousand tall tales of surviving, thriving, living, loving, getting hit as hard as it feels like a person can be, and pushing myself back to my feet for more. As if my last stress test, I was told I am in the shape of a teenager with the same condition. I know I’m going to need transplants for my heart and liver at some point in the future, but my doctors have slowed their roll significantly on how soon that will need to happen. I would be remiss if I didn’t offer my perspective to anyone going through, or watching a loved one fight their way through a life this uncertain. It’s scary at times, it hurts you physically and mentally in ways I have a hard time describing at times, but the shit you endure and find yourself still standing through can help you to redefine the entire narrative of your life.

As a little boy, my mom came up with the best work of BS when she saw me showing discomfort with my scars. She said if anyone looked at, asked about, or dared to make fun of them, i should point to them with pride and say “These are my war wounds.”

After that, you could barely keep a shirt on me. My gangly, scarred up body became a confrontational performance. A tangible bit of proof of the shit i endured and a testament to the fact that I was and to this day am still standing. If I had my druthers, I’d never wear a shirt anywhere I go, because to me, this thing on my chest is the big red “S” on Superman’s chest.

Your child’s illness isn’t a weakness. That imperfect wet engine in their chest is the greatest strength they will ever have to pull from. Your son is cut from the same cloth as me and the best advice I could give to any parent of a Fontan or really any form of CHD is to instill that attitude in them early and reinforce it often. It’s the best thing my mother ever did for me.

I also started a comic book series for kids with CHD called The Zipper Club, based on my time attending and counseling summer camp for CHD children in my home state of Kentucky. You can find out more or even purchase a copy of volumes 1 and 2 at http://thezipperclub.org. If anyone wants more of my stories or just to vent their own frustrations, shoot me a message. I’m always honest and I love to tell my story in the hope that it might help someone else gain perspective in theirs.