• If You Have Congenital Heart Disease: Transitioning from Pediatric to Adult Care


    You may hear treated congenital heart defects described as “fixed.” However, even today's more advanced treatments cannot necessarily "cure" congenital heart disease or permanently prevent recurrent heart problems. Caregivers may feel that your child needs minimal additional care for his or her heart disease as an adult, but that doesn’t mean that your child won’t need any specialized cardiac care. As a parent you want to make sure that there are no additional issues that your child may have as he or she becomes an adult. Many adults who were born with a heart condition require lifelong and regularly scheduled follow-up with a cardiologist. Adults with congenital heart disease may also need treatments or procedures, such as special medications, heart catheterization or future surgery.

    Preparing Your Child for the Transition to Adulthood

    As a parent, you want your child with congenital heart disease to grow up to be a happy and healthy adult. One of the biggest fears many parents have is that their children will not manage their health when they are out on their own or away in college. Children have a much better chance of managing their own health as adults if they learn how to do so at an early age and develop early initial habits for heart health.

    It is very helpful if, as soon as possible, parents teach their child what medications he or she is taking and why, explain to the child his or her heart defect and surgeries, allow their child to ask the cardiologist and primary care doctor questions, and help their child - in an age-appropriate way - to manage his or her health.

    This process should ideally begin well before the child is approaching adulthood. Seek out medical centers that offer specialty adult congenital heart disease care. It is also important to note that the transition process affects the parent or guardian and caregivers as well.

    Taking Over Your Own Care as an Adult

    If you are a young adult with congenital heart disease, you may find yourself taking over your own care from family members for the first time. So it’s very important that you understand your cardiac issues as much as possible. As an adult with congenital heart disease, you may be wondering:

    • What kinds of activities can I, or can’t I, do?
    • How can medical insurance be obtained and maintained?
    • What kinds of employment will be okay?
    • As a woman with congenital heart disease, will pregnancy be safe for me and my baby?
    • As a man or woman with congenital heart disease, are my biological children more likely to be born with a heart defect?

    These are but a few of the important questions that you may face as an adult with congenital heart disease.

    Most people with congenital heart disease need some specialized adult congenital heart disease care. Your medical needs as an adult with congenital heart disease are different from the needs of children with heart defects. You may best be served by a physician and medical center with experience in treating adults with congenital heart defects. These adult congenital heart disease care teams have the best experience and up-to-date knowledge to help you. Guidelines for care of adults with congenital heart disease are outlined in a report from the American College of Cardiology and American Heart Association, as well as a report from leading physicians groups, available here.

    If you are an adult who has only recently been diagnosed with a congenital heart defect, the information here can be helpful to you as well. While you will not be transitioning from pediatric to adult cardiology care, you will have similar needs in terms of identifying a specialist who can treat you and acquiring medical records and health insurance. Follow these links to learn more:

    Questions to Ask Your Doctor About the Transition from Pediatric to Adult Care

    The following questions can help you talk to your physician. Print out or write down these questions and take them with you to your appointment. Taking notes can help you remember your physician’s response when you get home.

    • What information do you need from me (medical records, etc.), and how can I get that information?
    • For my particular form of congenital heart disease, what follow-up care might I need throughout adulthood?
    • What other kinds of specialist physicians might I need to see?
    • What other professionals may be of benefit to me (health insurance/financial counselors, social workers, mental health counselors, career counselors)?
    • How do I obtain/keep health insurance?
    • Who can I turn to for support (hospital staff, support groups, etc.)?