When children who were born with congenital heart defects become teens and young adults, they may believe they no longer need to be followed by a cardiologist. However, it is recommended that these patients see a cardiologist with special training in adult congenital heart disease at least once in their lifetimes and often more, depending on their condition.
It is estimated that less than 20 percent of adults born with a heart defect are still receiving the specialized care they need, a circumstance the medical community refers to as being “lost to care.” Because CHD-related issues are very different from typical adult heart problems, it is important that patients continue to be monitored by a congenital heart specialist as they enter adulthood.
There are long term issues associated with being born with congenital heart defects,” said Rusty Rodriguez, MD, pediatric and adult congenital cardiologist at Sibley Heart Center Cardiology and the Children’s Healthcare of Atlanta Heart Center who specializes in transitioning children with CHD to The Emory Adult Congenital Heart Center. “For example, patients can develop abnormal heart rhythms or valve issues into adulthood. They may need additional valve procedures, heart rhythm interventions and further medical management.”
Becoming lost to care is problematic because Adult Congenital Heart Disease (ACHD) patients often re-enter care because of an emergency that could’ve been avoided or mitigated if they had continued their care. It has been demonstrated that CHD patients are more likely to live longer under the care of adult congenital heart specialists and surgeons.
Some reasons that ACHD patients are lost to care include believing they were “cured” in early childhood. Healthcare concerns can take a backseat to other changes people experience as they go to college and start their lives. Teenagers have a desire to not be different from peers, and they may stop taking medications and simply not know pertinent details of their own CHD.
“Sibley pediatric cardiologists begin initiating conversations with teenagers about their own healthcare early, usually around age 12 or 13,” Dr. Rodriguez said. “We want teens to know what heart issue they were born with, what medications they take, as well as activities they should participate in.”
Below are just a few examples of CHD patients who have transitioned from Sibley Heart Center to an adult cardiology center. Once a patient phases out of the pediatric cardiology program it is very important they continue care in an adult program.