Anitha John, MD, PhD, is the Director of the Washington Adult Congenital Heart (WACH) Program at Children’s National Health System, and Ruth Phillippi, MS, is the Program Coordinator for the program as well as an adult congenital heart disease patient. Together, they share advice about the importance of lifelong care for CHD patients, including a list of helpful tips for parents of CHD patients transitioning to adulthood and managing their own healthcare. Read more below.
Congenital Heart Defects (CHD) remain the most common birth defect. More than likely, we will all know someone in our family or in our circle of friends who was born with a heart problem. Thanks to major advances in medicines and surgeries, children with CHD have more than a 90 percent survival rate and are expected to live well into adulthood. There are currently more than 1.3 million adults in the U.S. with CHD – greater than the number of children with these conditions – and this number is expected to grow. It is very important to know, however, that CHD is a lifelong condition and even if a patient has had surgery, that does not equal a cure. Adults with congenital heart defects have unique healthcare needs and complications that need to be monitored.
Below are eight tips to help your child with CHD prepare for a bright future as an adult with CHD:
- Help your child learn the name of his or her condition, their medications, and their medical history. For young women, it is important to know what kind of birth control is safe to use as they get older, as well as the risks of pregnancy.
- Encourage your child to become more independent. This can include making doctor’s appointments, calling for refills on their prescriptions, or asking questions at their doctor’s visit.
- Know what signs or symptoms to watch for as your child gets older.
- Know how to find specialized adult CHD care, so that you and your child can feel prepared to move on to new stages in life like a job, college, traveling, etc.
- Work with your child’s pediatric cardiologist to transition to an ACHD cardiologist when the time is right (usually around the ages of 18-24 years).
- Know how often your child needs to be seen. Whether your child sees their team every five years or every six months, it’s important to be consistent so that your team can catch any small problems before they become big ones.
- Encourage your child to stay active and live a healthy lifestyle. Ask your cardiologists what activities are safe for your child.
- Be respectful when your child wants to ask their doctor questions in private. The goal is to raise independent adults who will take charge of their own healthcare.
The Washington Adult Congenital Heart (WACH) program at Children’s National Health System was developed to provide lifelong care to adults with CHD. One of the most important resources for helping CHD patients stay healthy as they age is cardiologists who specialize in Adult Congenital Heart Defects (ACHD). These doctors have a unique understanding of the surgical and medical procedures done in childhood as well as how aging and other disease processes can affect the heart health of adults with CHD. The WACH program has two board-certified physicians in adult CHD in addition to nurses and advanced practitioners specialized in ACHD care.
For more information about the Washington Adult Congenital Heart Program at Children’s National, call 202-476-2728 or visit childrensnational.org/adultcongenital.