Parents play a crucial role in managing care for children with congenital heart defects. But as children mature into adulthood, learning how to manage their own health is critical to their future wellbeing.
Having a congenital heart disease doctor in adulthood is important because there are complications that can occur later in life. For example, heart valve leakage may develop and progress. Left undetected, it can lead to heart failure or arrhythmia. Early diagnosis and treatment can prevent these conditions from occurring.
Education is also a key component of the Congenital Heart Transition Program, also known as “The Journey to Knowing My Heart.” Physicians, nurse practitioners, social workers, psychologists, and child life specialists help children understand their condition, the treatments they need, and how to manage heart disease throughout their lifetime. We also provide social and emotional support.
As children mature, we talk about issues that come up in the teen years and young adulthood, such as the effects drug and alcohol use can have on the heart. For young women, we discuss the importance of preventing unplanned pregnancy, and seeing their cardiologist should they become pregnant, and even before. We also help children and young adults manage the anxiety that can accompany living with a heart defect.
By the time patients enter their late teens and early adult years, they are ready to graduate to the care team at the Adult Congenital Heart Disease Program, which is the only program in New York state accredited as a comprehensive care center by the Adult Congenital Heart Association.
We understand that leaving the pediatric doctors and staff who have provided care throughout childhood can be difficult. Through education, support, and collaboration, we aim to make the transition as simple as possible.