Congenital Heart Disease and the Transition from Teen to Adulthood

Hunter Appleton was born with a coarctation of the aorta and overcame spine damage during open-heart surgery as a child. Today, he is studying to become a pediatric cardiothoracic surgeon.

Congenital heart disease (CHD) is the most common birth defect in the United States. With advancements in research and care, people born with heart disease are living longer and thriving. The shift from teen years to adulthood for CHD patients is a critical time in their care.

Lifelong specialized care results in better outcomes

Adults with congenital heart disease (ACHD) have better health outcomes when they get care at an ACHD center(link opens in new window). It’s important to help teens with CHD transition from pediatric cardiovascular care to ACHD treatment centers and specialists. Planning this transition usually begins around ages 12-16. Transfer of care is often between ages 18 and 21.

To help shift to a new health care team, it’s helpful for young adults with CHD to:

• Understand their specific heart condition to make informed choices and prepare for possible adult CHD-related issues
• Understand how to navigate the health care system
• Know how to refill prescriptions
• Clarify their health insurance(link opens in new window) options and processes

The American Heart Association recommends that CHD programs and health care professionals have transfer-of-care policies and procedures for effective handoff from a pediatric cardiologist to an ACHD cardiologist.

Support for Mental Health

Mental health support is an important part of the shift to adulthood and overall care. CHD survivors are more likely to have mental health challenges. Teenagers can have unique stressors. Health care professionals should regularly check patients for signs of depression, anxiety, PTSD(link opens in new window) and thinking or memory problems. They should refer patients to safe, effective treatments when needed.