Daily Care for Children With Congenital Heart Disease

Regular checkups are important for all children, especially for those with congenital heart disease (CHD). Your child’s heart doctor will want them to see their regular doctor for routine care.

Most children with CHD handle common illnesses, such as colds, about the same as other children. Most children do not need extra medication for routine illnesses unless their healthcare team recommends it.

In most cases, your child doesn't need antibiotics to prevent infections. There are some exceptions, such as children with conditions that affect the immune system, including asplenia or some cases of DiGeorge syndrome. Giving antibiotics when a child doesn’t need them can actually cause problems, such as making infections harder to treat later.

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

Preventing infections starts with simple steps such as good hygiene and healthy habits. Wash your hands often with soap and water, especially during cold and flu season.

Some children at higher risk of infections may need to avoid crowded places during times when respiratory illnesses are spreading. You can also ask whether daycare is a good option for your child.

Keep up with regular checkups and the vaccines your doctor recommends for all children. A yearly flu shot is also important beginning at 6 months of age.

Some babies and young children with certain heart conditions may need extra protection from RSV during winter. Your doctor can tell you whether RSV preventive medication is recommended for your child. 

Regular checkups for children with CHD

Most children with heart defects need regular checkups with a heart doctor. Visits are usually more frequent right after diagnosis or surgery and less often as your child gets older. For some mild conditions, checkups may only be needed every few years.

Depending on your child’s needs, the doctor may sometimes recommend testing. These may include:

• Electrocardiogram (EKG)
• Wearable heart monitor (Holter monitor)
• Chest X-ray
• Transthoracic echocardiogram (TTE)
• Transesophageal echocardiography (TEE)
• Heart imaging, such as MRI or CT scan
• Exercise stress testing
• Cardiac catheterization and angiography

Preventing infective endocarditis in children with CHD

Infective endocarditis (IE) is an infection in the lining of the heart or heart valves. It can happen when bacteria enter the bloodstream.

Most children will not get IE. But some children with certain heart defects have a higher risk.

Good daily habits can help lower the risk:

• Brush and floss teeth regularly to keep gums healthy
• Keep up with regular dental visits
• Follow your child’s care plan from their doctor

Only some children need antibiotics before certain medical or dental procedures. Your child’s heart doctor can tell you if this is needed.

If you have questions, ask your child’s healthcare team.

Find out more about infective endocarditis.

Physical activity for children with CHD

Most children with CHD can safely participate in regular physical activity. Being active helps keep the heart healthy and supports a healthy weight. Fun ways to stay active include:

• Swimming
• Bike riding
• Running
• Jumping rope
• Playing sports such as tennis

Some children with certain heart conditions may need to limit some strenuous or competitive activities. Your child’s heart doctor can guide you on what is safe.

As your child grows and their interests change, it’s a good idea to talk about activity at each checkup.

Nutrition for children with CHD

Healthy eating is important for babies and children with CHD. Following heart-healthy eating recommendations for your child’s age can help them grow strong.

Your child’s healthcare team can give you advice that fits your child’s needs.

Sometimes babies and children with heart disease need extra calories or special foods to help them grow and stay healthy.

Learn detailed recommendations for your child's nutrition.