One in 100 babies born in the United States has a congenital heart defect (CHD), which usually means a lifelong sentence of surgeries and treatment to stay alive. Misty Sharpe, 33, the Accreditation Manager for the Adult Congenital Heart Association, shares her and her family’s story of CHD.
June 20, 1987. The day my parents’ world changed forever.
I was born four days prior and while preparing for discharge, a nurse rushed in and said, “We are having a problem. Misty is turning blue.” A neonatologist from another hospital stopped by on his way in to work to examine me. His steps quickened as he saw me from across the room, struggling to breathe and my skin now a bluish purple.
In the hours that followed, I would be diagnosed with several heart defects, including coarctation of the aorta, a narrowing of the main vessel that provides oxygenated blood to the body, and ventricular septal defect, which is a hole in the heart.
At 7 days old, I underwent my first of four heart surgeries before age 5, with the last replacing my aortic valve with a mechanical one. I am now 33 years old and my valve continues to function well — its ticking sound a welcome reminder that I am alive and thriving.
Less than a year after my fourth surgery, my nephew Drew was diagnosed with a CHD called truncus arteriosus. Growing up, Drew was the only person I knew with a CHD and, like me, he also had four surgeries with his last at 17 years old.
Because of our journeys, I knew I wanted to make a difference, so I obtained a degree in communications with the intention of working in the non-profit sector, but eventually found myself pursuing and receiving a nursing degree. I worked in a pediatric cardiac ICU, which was one of the hardest yet most rewarding things I’ve ever done in my life.
Turn for the worse
Nov. 10, 2013, however, was the day that would change the trajectory of my life. That was the day I received a phone call that Drew had gone into cardiac arrest and couldn’t be revived. He was 20 years old. I had seen him about a month before — in the last photo I took of him, he was in my parents’ boat out on the lake. Smiling. Laughing. No warning signs of what was to come.
A few years prior, I discovered an organization called the Adult Congenital Heart Association (ACHA) and learned that I, along with Drew, should be under the care of a cardiologist who specializes in adult congenital heart disease. Feeling the need to channel my grief over Drew’s death into something positive, I began sharing mine and Drew’s stories and volunteering with ACHA.
In 2017, I joined ACHA’s staff where my journey has now come full circle through educating others, advocating for adults like Drew and I, and raising awareness for the world’s most common birth defect.