• Continuing Care as an Adult with Congenital Heart Disease


    Even today's more advanced treatments cannot necessarily "cure" congenital heart disease or permanently prevent recurrent heart problems. Many adults who were born with a heart condition require lifelong follow-up with a cardiologist. They may also need treatments, such as special medications, implantation of pacemakers or procedures to repair new or recurrent heart defects.

    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 who has experience in treating adult congenital heart defects.

    These specialized physicians may be available to you, regardless of your age, at a children's hospital or at a hospital serving adult heart patients. Increasingly, adults with congenital heart disease are seen by specialists at centers with experience in managing these patients. These doctors can, of course, help you with medical issues, but they are also trained to discuss other important concerns, such as employment, insurability status, support groups, pregnancy, contraception and additional non-cardiac medical issues such as diabetes.

    Additionally, as an adult with congenital heart disease, you may find that you are taking over your own care from family members. The amount of information you may have available to you about previously performed procedures may vary. You can work with your cardiologist and other hospital professionals to try to “fill in the gaps” related to treatment in infancy or childhood as you develop a plan for monitoring your heart health as an adult.

    If you are an adult with newly diagnosed congenital heart disease, you will work closely with your cardiologist to assess the type and severity of the defect and any necessary treatments.