Congenital heart disease is now far more than a child’s disease.
Thanks to incredible advances in CHD 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 with CHD, says Timothy Cotts, M.D., a board-certified adult congenital heart disease specialist at the University of Michigan C.S. Mott Children’s Hospital. Here’s how these patients should think about their care as adults
Your heart condition wasn’t cured
Many people who underwent heart surgery as children to repair or address congenital heart defects assume they are no longer an issue.
“Unfortunately, the reality is that even after your condition is ‘fixed,’ you’re not necessarily cured,” Cotts says.
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 says.
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 long-term needs of adult CHD patients are often a surprise, unfortunately. Some studies suggest less than 10 percent of adults who were born with CHD receive follow-up monitoring as adults.
Your heart is not like everyone else’s
“Many adults with CHD don’t realize how different their hearts are than other adult hearts,” Cotts says.
The reasons vary. Some were treated as children and never learned much about their conditions in the first place. Others may assume the childhood repair made them just like everyone else.
Even after a repair, though, the hearts of adult CHD patients can be very different from those of their spouses, siblings and friends.
“The surgical repairs themselves create unique anatomic features you don’t see in other adults,” Cotts says.
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 the evolution of how those defects have been repaired over the years, and it’s not uncommon for adults with CHD to be “one of a kind,” Cotts says.
You should see a special type of doctor
Cardiologists receive extensive training in heart care, but because your heart is different, you 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, a designation that confirms the physician has received extensive training in the care of adult patients with congenital heart disease.
“Adult congenital cardiologists are trained both to understand and identify long-term complications of congenital heart disease as well as understand the management of adult issues that are sometimes seen in these patients, such as elevated blood pressure and coronary artery disease,” Cotts says.
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 says.
Things are different now
Having lived through what may have been difficult experiences as children, many adults may prefer to avoid the prospect of additional specialized care.
“Some patients are afraid to come back to cardiac specialists out of fear that they may require additional cardiac procedures,” Cotts says.
But an adult congenital heart specialist can help you understand what is going on. From there, even if you do require treatment, you may be surprised that today’s treatment options are much different from some of the options patients faced even just a few years ago.
You’re not alone
Many adults with CHD find considerable benefits to meeting other adults with CHD.
“Never underestimate the power of shared experiences,” Cotts says. Many patients find it helpful to talk to someone who has been or is currently in a similar medical situation.
The Adult Congenital Heart Association offers an ambassador programthat connects adult CHD patients and family members with peers trained to provide support and guidance. In addition, online discussion forums and support events can be a great way to network with others who have had similar experiences.