Adults with Congenital Heart Defects Lost to Care?

Once upon a time, there were more babies alive with congenital heart defects than adults because babies and children often passed away before they became adults. In 2008 there was a special report published in Circulation, the journal of the American Heart Association, that stated that adults with congenital heart defects outnumbered the number of babies with congenital heart defects. Apparently, that milestone was reached as early as 2000. An article in Heart: An International Peer-Reviewed Journal for Health Professionals and Researchers in All Areas of Cardiology had an articled entitled, “Loss to Follow-up of Adults with Repaired Congenital Heart Disease” by Christopher Wren and John J O’Sullivan. It stated that by 2000 adults with CHDs outnumbered babies with CHDs for the first time ever. The article addressed the concern doctors had for the increasing population of adults with congenital heart defects and stated that the loss to follow-up care began when survivors were still children.

It is readily apparent that our infants and young children need follow-up care, especially since those children with critical congenital heart defects often have staged surgeries that last for the first years of a child’s life. What happens to children after they have completed their staged surgeries? What kinds of concerns do parents have as their children with congenital heart defects age? What happens when a parent’s insurance has capped out? To read more go to the Baby Hearts Press Blog.