by Carolyn Thomas   ♥   @HeartSisters

I know that every cardiac diagnosis is frightening, but I suspect that congenital heart disease (CHD) may be the most frightening if the patient is your own child. The word “congenital” means “present at birth” – although sometimes the problem doesn’t show up until babies  are older, even into adulthood. When I first wrote about CHD here on Heart Sisters, I learned that there are now more adults than children living with CHD. Like many people, I’d associated congenital heart disease with photos of tiny babies recuperating from open heart surgery. Cardiac researchers in Texas called this growing adult population “the product of the astounding success of pediatric cardiac surgery.”¹

Surgical advancements have indeed kept little heart patients alive far beyond the early days of pediatric surgeries. But what’s still missing from this good news is the reality that little heart patients grow up to be big heart patients – with one remarkable difference. Unlike in other cardiac diagnoses, people who were born with CHD are far less likely than the rest of us to receive the ongoing cardiac follow-up care that I and other heart patients take for granted.
Continue reading “Congenital Heart Disease: the poor cousin of childhood diagnoses?” →