This Valentine's Day - Go for the Gold!
On this Valentine's Day, in the middle of Congenital Heart Disease Awareness Week, children with congenital heart disease (CHD), their families and friends are celebrating. For a set of diagnoses where lifespan used to be limited and children were excused from gym class and taught about exercise restriction, we have come incredibly far as we now support exercise prescription. Last night, children and adults with CHD watched Shaun White demonstrate not only the physical abilities of individuals with CHD but the incredible resilience that comes from CHD and extends to all aspects of life.
Allowing children with CHD to play sports, much less play aggressively to the point of risking injury, is not what our older ACHD patients recall about their care.
"I vividly remember sitting on the side of the gym. I was told not to overexert myself because the risk was greater than the reward. Outside of gym class I was normal. It was not obvious to friends why I was not participating." For children, it sends an awkward message because it isolates them and makes them feel different.
Studies now demonstrate that routine exercise can improve cardiopulmonary function in CHD. Increasingly patients report that exercise also builds a sense of self confidence and allows them to live with CHD and not be governed by it.
"I enjoy running," said a father with CHD. "My daughter and I went running on Saturday. Parents should encourage the kids to do what they can and at least get them to have fun. I'm glad that my adult CHD doctors have finally set me free. My advice to parents of kids with CHD? Let kids be kids. Watch them as any parent would, but don't artificially impede their abilities."
Importantly, one patient notes, "I live with CHD. It's not my enemy, it's a part of who I am." Shaun White has not shied away from discussing heart disease and has not hidden it. It is as much a part of him and his story as any other aspect of life. The ACHD community is proud of him for that honesty.
Centers of excellence for ACHD are increasingly encouraging activity and athletics. Adult CHD health and wellness programs have been established to support all aspects of cardiovascular care. Now, centers are focusing on athletes with CHD. We are fortunate to have strong cardiac performance programs and congenital heart programs residing in the same world-renowned institutions that care for acutely ill and seemingly hopeless cases. It is time for us to come together with these teams to support our current and aspiring CHD athletes. Shaun White went for the gold; we should aim for nothing less for our patients. Happy Valentine's Day!
Keywords: Athletes, Child, Parents, Heart Defects, Congenital, Pediatrics
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