When I was born in 1990 with two congenital heart defects (Transposition of the Great Arteries, as well as a ventricular septal defect), it wasn’t clear whether I would survive long enough to be writing this today. Though VSD was a common enough occurrence, TGA was a relatively unknown condition at the time, affecting only about 5 out of every 10,000 babies born in the U.S. each year. Luckily, a fateful series of events got me to the right hospital at the right time with the right doctor, who intervened to save my life. 26 years later, I am thriving – and I have the scars to prove it.
When I think back on my time as a heart patient, many things come to mind: memories of the bitter taste of medicine in my apple juice, the incessant beeping of machines, the frigid air of the operating room… Attached to all these visceral memories is another, harder to define – something akin to loneliness. As a child, I carried within me a nagging feeling that I was different from all my peers, that I was not really one of them. My congenital heart defects had marked me as an Other, and I felt as though no one could ever understand or relate to my experiences as a cardiac patient.
I wish my family and I had had a support network of other families and patients who were in a similar situation. We had lots of family, friends, and neighbors who did all they could to help us, but we lacked a community of people who had experienced what we were going through.
I am very excited to be participating in the American Heart Association of Maine’s 2nd Annual “Little Heart Hero Day” this year. It is sure to be a great event, a gathering for kids and families affected by congenital heart defects, a place for survivors to compare scars and share their stories:
“[Lewiston, ME – September 26, 2016] — Heart defects are the leading birth defect in Maine children. The American Heart Association is hosting its second annual “Little Heart Hero Day” – an afternoon of fun and networking for children with congenital heart defects and their families – on Sunday, October 16th at the Franco Center in Lewiston from 1-3 pm.
This free event will feature inspirational guest speakers, crafts, heart-healthy snacks, live music, and great networking for parents. Country musician Mark Gentle of Farmington will perform Carter’s Song for his son as well as additional live music. Mark and his family were featured on the Today show as well as Rachael Ray after their son Carter’s photograph of his heart scars went viral with an outpouring of support.
All Little Heart Heroes – survivors of congenital heart defects (CHD) – will receive personalized red capes. Family members can also enjoy many crafts including t-shirt and pumpkin decorating, make-your-own healthy snack bags, face painting, and an appearance by a balloon artist. Hands-Only CPR demonstrations will also be provided.
In the U.S. about 40,000 babies are born with a CHD each year, which equates to one child every 15 minutes. Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive. Today, because of advancements made through research, more infants born with congenital heart defects survive to adulthood. Despite the progress made in understanding and treating CHDs, more research is needed.
– AHA Press Release
All pediatric heart patients should have access to a network of other cardiac survivors, people who have beaten the odds and gone on to grow up to lead healthy, happy lives. These kids – and their families – deserve to know they are not alone. Kids with CHD need love, community, and hope that their own stories have many chapters ahead of them, just waiting to be written.