Devon has been named a Go Red for Women “Real Woman” spokesperson for our Go Red for Women national campaign. She is in the first class ever selected for Congenital Heart Defect Survivors. This is her story.
I was born with an atrioventricular septal defect and a mitral valve defect. My parents were given two choices when I was born: administer medications daily and hope that my heart would heal naturally or proceed with surgery. My future was uncertain regarding my mental and physical capabilities, with or without the surgery. Doctors explained to my parents that I had a high probability of having Down Syndrome and other developmental delays, and I would never be physically able to play competitive sports.
I had open heart surgery on July 26, 1991 at Children’s Hospital in Philadelphia and have not had any complications since. Throughout my childhood, my parents encouraged me to engage in sports and other activities of interest. I defeated the odds and wound up playing three competitive sports in school. Now I am a personal trainer, 200-hour registered yoga teacher, and I am pursuing my doctorate degree in occupational therapy. My advice to others is do not let your diagnosis define you, because you are more capable than you think.
My parents were aware of my heart defect because they had lost a daughter two years prior. Jessica suffered from a coarctation of her aorta and an atrioventricular septal defect which led to heart failure when she was two days old. After transporting her to Children’s Hospital in Philadelphia, she spent the next four months on a ventilator, but unfortunately Jessica passed away due to brain damage while suffering another heart attack. Years after I recovered from surgery, my mom became pregnant again with another baby girl, but she passed away in utero due to congenital heart disease.
Our family did not have any pre-existing conditions, yet all three children experienced heart defects. While we may never understand why this happened, I feel it is my responsibility to share the impact of cardiovascular disease with as many people as I can. Cardiovascular disease is the #1 killer of women, and out of the 40,000 babies born each year that experience heart defects, 10,000 will require surgical intervention.
Research has come a long way, but still too many people are impacted by this chronic condition. My challenge to you is this: Become your own health advocate, learn your family history, do research, ask your doctors questions, and stay proactive with your health.
Kevin is the Communications Director for West Virginia and Western Virginia. When not in the office, Kevin is an active performer with the State 35 Comedy Troupe and is the founding member of the Ghostbusters – WV Division fundraising team. He has been with the organization since 2005.