Zach G's Story

Updated: May 21, 2020

I was born with a congenital heart defect called bicuspid aortic stenosis with regurgitation. This means my aortic valve is misshapen, causing the blood pumped from my aorta to flow backwards. Because it has to work harder to provide blood to my body, the heart gradually becomes enlarged. While most people consider having a big heart a good thing, it is also life threatening.

I grew up with a passion for all things sports, and was lucky enough to be very athletic. Although cardiologists continuously monitored me, my early years of childhood were spent running around from baseball to basketball to soccer games.  At the same time, I knew from a very young age that I was going to live a different life than most of my friends; my dreams of becoming the next Derek Jeter were gone by the time I could step onto the field.

In eighth grade I began experiencing shortness of breath, dizzy spells and debilitating migraines. I went from standing on a baseball field to standing in a puddle of tears as my cardiologist told me that because I faced a high risk of sudden death I could no longer play sports and needed immediate open-heart surgery to replace my aortic valve. I will never forget his suggestion that I “take up chess.”  As my friends ran around during recess, gym class and after school sporting events, I sat in the stands wondering “why me?”

After several second opinions, my family decided to postpone surgery to wait for my heart to more fully develop. Nonetheless, my life had changed forever.

High school was extremely challenging physically and emotionally. I felt alone, afraid and confused. While my classmates went to sports practice, I walked home, sat on the couch, watched TV, got fat and felt like I had no friends. Every three months my cardiologist preformed echo-cardiograms, EKG’s and stress tests. Yet my passion for sports never wavered. I convinced my cardiologist to allow me to play baseball by telling him that “sports are my life, and if I can’t play sports there was no point in living.” Still I felt different than everyone else.

At college, my passion for sports led me to major in sport management and student manage the basketball team. Although I continued to undergo significant testing, my life seemed to be turning in the right direction. The day before starting my sophomore year of college, I went for a routine checkup at the Children’s Hospital of Philadelphia. Tears streaked down my cheeks as my cardiologist told me it was time for surgery.

On December 15th, 2010, as a 20-year-old college sophomore, I faced the toughest challenge of my life and underwent open-heart surgery to replace my aortic valve.  While the eight-hour surgery was a success, the road to recovery did not go as smoothly.  I lost a significant amount of blood, received five blood transfusions, and continuously asked my family if I was going to die.  The once extremely athletic kid could not even get out of a hospital bed.

After being released from the hospital, I spent the next several weeks lying in bed, staring at the incision and recovering from the impact of surgery. Things I once took for granted such as standing, walking, and eating were daunting. Two and half years later I walked across the graduation stage with a size 23 mm bovine cow valve in place of my aortic valve and a greater appreciation for how precious life is.

Since heart surgery in 2010, I have run 2 NYC marathons, and numerous other races on behalf of the American Heart Association, an organization which I am very active in.  I graduated law school and worked as a real estate attorney at a large law firm in NYC and then for WeWork.   

My condition is such that I may need additional surgeries to replace the aortic valve.  I continue to monitor my symptoms and undergo routine testing with my cardiologist.    

People sometimes say they feel bad for what I have been through.  Open-heart surgery allowed me to have an amazing perspective and appreciation for how special life is.  For that, I consider myself the luckiest guy in the world. 

#CongenitalHeartDefect #BicuspidAorticStenosis #Marathon

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