Self-management

After treatment, you might have some concerns about how best to manage your or your child's condition, including:

  • Preventing infection. A child, adolescent or adult who has severe heart defects might need to take preventive antibiotics before certain dental and surgical procedures. Your or your child's doctor can tell you if this is necessary. Maintaining good oral hygiene and getting regular dental checkups are excellent ways to help prevent infection.
  • Exercising. Parents of children or adolescents with congenital heart defects or adults who have congenital heart defects often worry about the risks of vigorous activity even after successful treatment.

    Although some children, adolescents or adults might need to limit the amount or type of exercise, many can lead normal or near-normal lives. Decisions about exercise need to be made on a case-by-case basis, so ask your or your child's doctor which activities are safe for you or your child.

If you're an adult who has congenital heart disease, you might have concerns, such as:

  • Employment. Having a congenital heart defect generally won't limit your career options. If you have serious heart rhythm problems or the potential for life-threatening complications, evaluation by a specialty team is needed to determine risk, provide therapy and counsel people regarding employment.
  • Pregnancy. Most women who have congenital heart disease tolerate pregnancy without any problems. However, a severe heart defect or complications such as arrhythmias can increase the risk of complications during pregnancy.

    If you have congenital heart disease, discuss family planning with your doctor. Your doctor may recommend that you be seen by a doctor trained in congenital heart disease before pregnancy and that you receive care during your pregnancy from doctors trained in congenital heart disease, genetics and high-risk obstetric care. Some heart medications aren't safe during pregnancy and might need to be stopped or adjusted before you become pregnant.

It can be extremely frightening to learn that you or your child has potentially life-threatening heart defects. Although support groups aren't for everyone, talking to other adults with congenital heart disease or to other parents — especially those whose children have already gone through corrective surgery — can give you hope, encouragement and support. Ask your or your child's doctor if there are any support groups for parents of children with heart defects or adults with congenital heart disease in your area.

If your child has a heart defect, be sure to give yourself a break at times. Ask other family members or friends to help take care of your child. When your child is in the hospital, see if you can schedule friends and family to visit with your child so that you can go home to take a shower or nap, or to spend time with your other children.

To help coordinate your or your child's care, you might prepare a brief note with your or your child's diagnosis, medications, surgeries and dates, and the cardiologist's name and number. This note will provide necessary information to others who might care for your child and will help any new doctor understand your or your child's health history.

If you change health insurance plans, be sure your new plan will cover your or your child's care. Some plans might not allow coverage for pre-existing conditions or might require a waiting period.