Special Needs For Children with a Congenital Heart Defect

Regular medical care is important for all children, but especially for those with congenital heart defects. 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 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, including 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 make the child resistant to antibiotics in the future.

Jackson at AHA event wearing red cape

Jackson was born with tricuspid atresia, hypoplastic right ventricle, atrial septal defect and a ventricular septal defect.

It's best to remember that preventing infection starts with good hygiene, good nutrition and common sense. Frequent hand washing with soap and water is a good way to prevent illness, especially during the cold and flu season. 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 ask the 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. The influenza vaccine is also recommended when children are old enough. If your young child has certain heart defects, a series of monthly shots for the respiratory syncytial 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. They are usually scheduled more often 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 condition, periodic testing may be needed. These tests may include:

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

Preventing Infective Endocarditis

Infective endocarditis (IE) 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 physically active without restrictions. In fact, children are encouraged to be physically active to keep their hearts fit and to avoid obesity. Some healthy 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 high school competitive sports. It is good to have these discussions during each visit over the years as your child grows and interests change.


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 health care professional 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.