In recognition of National Congenital Heart Defect Awareness Week, we invited one of our volunteers to share his story.
By Guest Blogger Zachary Gotlib
I was born with a congenital heart defect known as bicuspid aortic stenosis with regurgitation. This means my aortic valve is misshapen and has two leaflets instead of three, causing the blood pumped from my aorta to flow backwards. Because it had 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, most of my childhood was 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, we decided to postpone surgery. Nonetheless, my life had changed forever.
High school was extremely challenging physically and emotionally. 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 echocardiograms, 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.
Although I will need surgery every five to ten years to replace my aortic valve, I have vowed to take advantage of my new lease on life. Less than six years ago, I was unable to walk down the hospital hallway. Three years after open-heart surgery I ran in the American Heart Association Wall Street Run and Heart Walk to raise money so that others would have the same opportunity I had. I have continued to participate in this event, helping to raise millions of dollars for the American Heart Association. This past year I graduated law school and will shortly begin my career with a law firm in NYC. On November 6th, 2016, I achieved one of my wildest dreams by crossing the finish line of the NYC Marathon with my shirt off, proudly showing my scar while at the same time raising money for the organization that saved my life.
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Information and opinions expressed within our Guest Posts are those of the author alone and do not represent those of the American Heart Association|American Stroke Association; nor does the Association endorse any products or services represented in this blog. In addition, these blogs are not intended to provide medical advice or treatment. The American Heart Association|American Stroke Association recommends you consult your healthcare provider regarding your personal health matters.