As a child living with a congenital heart defect (CHD), I knew that I was different. I went to the doctor a lot more often than my friends did. I had scars all over my chest and back. My parents were constantly asking me how my “chest felt” and if my “heart felt funny.”
I knew that I had been born with something called tetralogy of Fallot and that it meant that I had four heart problems including valve issues and holes, but nothing more specific. But, as a kid, none of that mattered to me.
I was a stubborn child and the more that my parents worried about me being too active through the day or getting injured in gym or falling down on the playground, the harder I would push myself. I played volleyball, softball, and soccer. I joined the gymnastics team and decided I wanted to learn tap and ballet.
When I turned 16, I scoffed at their suggestion that I could apply for a handicap placard for my car. I ignored the warning signs as I got on roller coasters that mentioned any kind of heart condition as being a reason not to ride. I knew that I had been born with a heart problem, but I also knew that I wasn’t going to let that impact my life.
While following my doctor’s recommendations, I continued this attitude of living in spite of my CHD throughout my teen and adult years. I received a full ride to college and graduated with my bachelor’s in Organizational Leadership. I got married at the age of 21 which some saw as too young, but when you’re very aware of the value of each day, you tend not to put things off longer than needed.
I got pregnant with my first son at the age of 23 and delivered him via C-section without any heart trauma to either of us. With a baby at home, I went back to school and earned my MBA while working full-time. I then had two more sons via C-section, both of whom were heart healthy. I went back to my job six weeks after each delivery and have been with the same company for 11 years – since the day I graduated college (literally, the same day!).
Even though I didn’t let congenital disease hold me back, I didn’t completely forget about those patched holes that had developed leaks through the years. I return to Cincinnati Children’s Adolescent and Adult Congenital Heart Disease (ACHD) Program, an ACHA ACHD Accredited Comprehensive Care Center, every year for a follow-up visit with my cardiologist. The buildings are different and now I go to the “adult side” of the congenital heart disease clinic, but the importance of these annual visits have remained the same.
Raising three boys and working full-time requires me to plan for the future and function at 100% all of the time. I feel comforted knowing that if my heart were to develop more complications, they would be caught in advance by my doctors, rather than taking me by surprise.
In the future, I plan to be more involved in the ACHD community. As a parent myself, I can’t imagine the pain and stress that a parent feels when their child is diagnosed with congenital heart disease. While I’m sure they try to stay positive, I know it was difficult for my parents as well as for myself growing up to do so. I want to show the families and the patients that there is hope, that you can grow up to not just survive your heart defect but to thrive in spite of it.