Special Needs For Children with a Congenital Heart Defect

Father kissing his young son's forehead

Regular medical care is important for all children, but especially for those with congenital heart disease. Your pediatric cardiologist will want your pediatrician or family doctor to check your child regularly.

A child with a heart defect usually gets through common childhood illnesses as quickly and as easily as children with normal hearts. Sometimes parents think that their child with heart disease will need more medicine to get through an illness but this is usually not true. Also, your child doesn't need antibiotics to help prevent infections with a few notable exceptions (e.g., children with heterotaxy syndromes like asplenia or in some cases of DiGeorge syndrome). Some parents think that giving their child antibiotics before the child is very sick will prevent the illness from getting worse. This also isn't true and may make the infection more serious and more likely to be resistant to the antibiotic that's given.

It's best to remember that preventing infection starts with good hygiene, good nutrition and common sense. Frequent hand washing (or using water-free hand washes) especially during the cold and flu season and avoiding ill contacts is a good way to prevent illness. Try to avoid crowded settings like shopping malls if your child's doctor is concerned that your child wouldn't tolerate an infection. You may want to discuss with your child's doctor or nurse if it's appropriate to have your child in daycare.

Your child should have routine care and the standard immunizations that your doctor recommends for all children. Your child may also need additional immunizations, such as the influenza vaccine. If your child has certain heart defects, a special monthly immunization for a cold virus (RSV) may be recommended during the winter months.

Learn more about working with your child's special needs

Checkups With Your Pediatric Cardiologist

Most children with heart defects need periodic heart checkups. Usually, they're scheduled more often (days, weeks, months) just after the diagnosis or surgery and less often later. For minor conditions checkups may only be needed every one to five years. Depending on your child's problem, periodic testing may be needed. These tests may include:

  • Standard electrocardiogram
  • 24-hour ambulatory electrocardiogram (Holter scan)
  • Chest X-ray
  • Routine (transthoracic) echocardiogram
  • Transesophageal echocardiography
  • MRI or CT scanning of the heart
  • Exercise stress testing
  • Cardiac catheterization and angiography

Preventing Infective (Bacterial) Endocarditis

Infective endocarditis (IE - also called bacterial endocarditis [BE]) is an infection caused by bacteria that enter the bloodstream and settle in the heart lining, a heart valve or a blood vessel.

Although IE is uncommon, children with some heart defects have a greater risk of developing it. Good dental hygiene goes a long way toward preventing heart infection by reducing the risk of a tooth or gum infection. The American Heart Association has also recently updated guidelines for preventing endocarditis. Your pediatric cardiologist will give you more information about the guidelines.

If you have questions, ask the pediatric cardiologist or nurse.

Find out more about infective endocarditis.

Physical Activity

Most children with a congenital heart defect can be fully active and don't need restrictions. In fact, pediatric cardiologists encourage children to be physically active to keep their hearts fit and to avoid obesity. Such healthful activities include swimming, bicycling, running, rope jumping and tennis. For a few specific heart conditions, a pediatric cardiologist may advise that your child avoid some strenuous physical activities and junior varsity or varsity competitive sports.


It's very important that babies and children with congenital heart defects follow the age-based American Heart Association recommendations for a heart-healthy diet. Your doctor, nurse or other healthcare provider can give you more information. Sometimes babies and children with heart disease need a higher-calorie diet or have special dietary requirements to grow well and stay healthy.

Learn detailed recommendations for your child's nutrition.