This past Sunday, October 16th, I was honored to be invited to the 2nd Annual Little Heart Hero Day in Lewiston, held by the American Heart Association in Maine. The event was for children and families affected by congenital heart defects.
A quick run-down for readers who may not be familiar with congenital heart defects: CHDs are the most common birth defect – nearly one of every 100 babies is born with a CHD. Each year approximately 40,000 babies are born in the US with a congenital heart defect. Events such as the Little Heart Hero Day bring awareness to the prevalence of CHDs at the same time as establishing a safe-haven for children and families who have been affected by them.
When I partnered with the American Heart Association this past spring, it was the first time I was able to meet other heart disease survivors who had experienced the same things I had, who shared common memories of cardiac procedures and operating rooms. I only wish my family and I could have met some of these folks when I was younger, when we most needed reassurance that we were not alone.
Observing the families in attendance at the Little Heart Hero Day, I was struck by how all the kids who wore capes to show off their Heart Hero status were acting like… well, kids. They were running around, sword-fighting with balloon animals, getting their faces painted, decorating pumpkins, having their pictures taken with the Subway mascot. An onlooker wouldn’t have guessed these kids are well acquainted with operating rooms and cardiac surgeons and echo-cardiograms. It was all so vibrant, so loud, so normal.
As a survivor of CHD myself, I shouldn’t have been that surprised. After all, with the exception of milking my heart condition on occasion to get out of gym class (sorry, Ashland School District), I have always insisted on being treated as normal. So why shouldn’t these kids want the same thing? The more I watched them run and laugh and play, the more I saw how beautiful, strong, and feisty these little guys and gals truly are.
It is exactly this feistiness that will help these kids grow up to be CHD survivors like Sarah Cummings, who shared her story on WMTW-TV in support of the Central Maine Heart Walk this past fall. Born with Tetralogy of Fallot, Sarah had two operations, one as a child and one as an adult. Now 31 years old, Sarah has two happy, healthy children and is living the good life. As the two oldest Heart Heroes in the crowd – though still all too happy to don our red capes – Sarah and I had a lot to chat about.
Making that connection with Sarah is exactly the type of bonding that the AHA sought to make happen with this event. Families and survivors affected by CHD need to know that they are not alone, that there are other people who can relate to what they are going through. It is one thing to hear that you are not alone; it is quite another to be able to meet and talk to a person with whom you can compare scars. Because when you see the scars, you know that they survived. And you know that you can, too.
For more information on CHD or for more information on upcoming events, go to: https://www.heart.org/HEARTORG/Affiliate/Scarborough/Maine/Home_UCM_FDA006_AffiliatePage.jsp.
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