What adults with heart conditions need to know

Congenital heart disease is far more than a child’s disease. Thanks to incredible advances in congenital heart care, more and more children with congenital heart defects are thriving into adulthood. In fact, more than 1 million U.S. adults live with such cardiac issues today.

That’s great news. But some adults treated for congenital heart disease as children may be in the dark on a few important aspects of living as an adult, says Timothy Cotts, M.D., a board-certified adult congenital heart disease specialist at U-M's C.S. Mott Children’s Hospital. Here’s how these patients should think about their care as adults:

The heart condition wasn’t cured

Many people who underwent heart surgery as children to repair or address congenital heart defects assume the issues are no longer an issue.

“Unfortunately, the reality is that even after your condition is ‘fixed,’ you’re not necessarily cured,” Cotts said.

This may come as a surprise to many CHD survivors. 

“As more and more children with CHDs have grown into adulthood, we’ve learned a lot more about the long-term effects of CHD care and some of the challenges these adults face down the road,” Cotts said.

Some studies suggest less than 10 percent of adults who were born with CHD receive follow-up monitoring as adults. However, adults with CHD can experience a number of health issues, such as abnormal heart rhythms, increased risk of stroke, premature cardiovascular disease and increased rate of hospitalization compared with other adults. Some people also outgrow or wear out valves, requiring replacements.

The repaired heart is not like everyone else’s

“Many adults with CHD don’t realize how different their hearts are than other adult hearts,” Cotts said.

After a repair, the hearts of adult CHD patients can be very different from those of spouses, siblings and friends. “The surgical repairs themselves create unique anatomic features you don’t see in other adults,” Cotts said.

Furthermore, there are a wide variety of heart defects, ranging from holes in the heart to more complicated problems in which only one of the pumping chambers develops normally. Add in that many patients have a combination of defects and it’s not uncommon for adults with CHD to be “one of a kind,” Cotts said.

You should see a special type of doctor

Cardiologists receive extensive training in heart care, but because a CHD heart is different, patients need a different kind of specialist.

The American College of Cardiology and the American Heart Association’s adult CHD guidelines suggest all CHD patients be evaluated at least once in adulthood. People who have complex conditions such as single ventricle defects, transposition of the great arteries and many forms of unrepaired CHD often warrant more frequent check-ins.

Look for a cardiologist who is board certified in adult congenital heart disease care.

Furthermore, choose a center with an established adult congenital heart disease program. “The more established centers offer a multidisciplinary approach to caring for adults with CHD, including having expertise in high-risk obstetrics, genetic consultation and the latest valve support technologies,” Cotts said.

For more tips on how to handle congenital heart disease as an adult, check out the U-M health blog.