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?
The articles I mentioned above along with the 32nd Bethesda Conference: “Care of the Adult With Congenital Heart Disease” address issues of concern from the CHD community at large about a growing population of adults -- adults with congenital heart defects. We cannot afford to lose these special individuals to follow-up care. We need doctors who are trained to deal with adults who don't suffer from acquired heart disease but rather who were born with congenital heart defects and who may appear different from their "typical" patients. There is nothing typical about our adults with CHDs, at least not the ones with critical CHDs (or CCHDs).
Many of our adults were pioneers who helped cardio-thoracic surgeons and pediatric cardiologists to develop new techniques. They were the guinea pigs who tried new medications to see if they would work well enough to allow growth and aging. Because of the brave parents who handed their children over to medical professionals and begged them to do whatever it took to give their children a chance for life, now these professionals know what works and what doesn't work. In adults with CCHDs, that might very well mean that a young surgeon will see an adult who had a surgical technique to save his/her life that was discontinued before the surgeon even entered medical school. This means that doctors today will see an even great variety of adults with CHDs who have had a number of life-savings techniques that aren't even utilized today.
Heart moms and dads, it's imperative that you don't believe that your child is "fixed" if they've had open-heart surgery. Even if the child has had a simple "hole in the heart" repaired, if the operation required the surgeon to open the child's chest, complications from the open-heart surgery may not be seen until years, possibly decades later. The problem is, since so many adults with CHDs are lost to follow-up care, we simply don't know what a "normal" course is for this special population.
Parents, please work with your child's doctors to work on transitioning our children from child to adult with CHDs and from pediatric cardiologist to a cardiologist who specializes in the care of adults with CHDs. If our aging population works together, our adults with CHDs have a much better chance of living the quality of life we parents dreamed they could live when we first handed our babies over to the care of a surgeon.