Guest Post: Growing up with a congenital heart defect

Editor’s note: This guest post was written by Daniel Hess, a writer and filmmaker from Baltimore who grew up with a congenital heart defect.

I was born with aortic valve stenosis, which was detected when I was only 1-year-old during a routine check-in with my pediatrician. My father would often reflect on this moment and tell me he knew something was wrong the second the doctor cocked his head to the side while listening to my heart.

His suspicions turned out to be true after I had my first EKG and echocardiogram shortly thereafter, the start of a yearly tradition for me.

As a child, I hardly noticed any difference in what I had with my day-to-day life. Playing at recess, running around with friends, it all felt normal to me. The only thing I had to do was get this gloppy goo put on me for an ultrasound of my chest every year. Back then, of course, it was also all recorded to videotape.

As the years passed, though, there were limitations put on me. I loved football then and my favorite player was Mark Brunell, the quarterback of the Jacksonville Jaguars, but my pipe dreams of being in any professional sports were dashed away as I was told that even high school sports would not be a possibility. I’ll never forget that day at GBMC, hearing the doctor walk me through things I should be careful doing.

However, as someone who has always believed in making lemonade out of lemons, I quickly focused on my academics and creativity. I became so invested in my schooling starting in sixth grade and quickly moved into almost all GT & AP classes. Yes, I was a complete geek with my grades, but I loved it. I even came complete with braces then and my goodness, don’t get me started on taking those big amoxicillin pills before each dental visit. Especially with my spacer, before the braces, and they would get stuck in the roof of my mouth … ugh!

Things were steady for a while after that. I knew that one day I was going to need surgery, but each year the message was the same. Maybe in your 50s or 60s, but it’s mild, so you have time.

So, I stayed away from pushing my limits, went to film school at Towson University, and for a while things were well.

That all changed in 2018 when I changed my insurance plan and saw a new cardiologist who came back to me with a more dire report than I had ever had before. His assumption was that I was only a few years at most away from needing open heart surgery.

I was taken aback and immediately got in touch with a different cardiologist to get a second opinion. It was confirmed. So, my yearly check-ups turned into six-month check-ins to monitor everything.

I was terrified. I knew that with modern medicine, heart surgery had an amazing success rate, but that slim chance still kept me up at night.

Finally, word came in December 2021 that it was time. On Jan. 14, 2022, I went to the University of Maryland Medical Center for surgery. I always said the first mission was just to wake up and then I would take it from there.

Well, that afternoon I woke up and I remember seeing my mom right there in the room with me. The first thing I did was tell her I loved her and recovery was officially under way.

It was not a straightforward journey getting back to 100 percent, but I climbed the mountain and I can gladly say that I now have a new lease on life. It is a new positive chapter and one that I can’t wait to share with the world in all the projects I am slowly bringing to life.