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?

When parents have an infant born with a congenital heart defect they are immediately thrust into a position where it is common for them to go into shock. It is also not uncommon for parents of children to experience post traumatic stress disorder (PTSD). Some parents even find out while the mother is pregnant that the baby will be born with a less-than-perfect heart. This requires parents to make decisions that parents didn't have to make before ultrasounds helped detect problems with unborn babies' hearts. Now parents don't only have to decide where their children should have surgery and who the surgeon should be; now parents are having to decide whether or not their should abort their unborn children. In the past I've actually had fathers call me to ask how much it cost to have a child with a heart defect. With each child's care being so different, of course I couldn't give a figure but I can't help but wonder if that consideration is going to be even more prevalent now that we know that an increasing percentage of our children will make it to adulthood.

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.

What does this mean for adults with CHDs? I believe the most important thing for adults with CCHDs to know is that they must continue to see their primary care physician and cardiologist on a regular basis. It is only through doctors amassing more data on what happens to these individuals as they age that we can look for trends and patterns. It's heartbreaking to think of an adult with CHDs being brought into the emergency room with something (like a stroke or heart attack) that could have been prevented had they not been lost to follow-up care.

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.