What is congenital heart disease?

Congenital heart disease refers to problems with how a baby's heart forms. "Congenital" means that the heart problem has been present since birth.

There are many different types of congenital heart problems. They can be fairly simple, such as a hole between the chambers of the heart or a heart valve that has not formed right. Others are more serious and complex, such as a missing heart valve or heart chamber.

Most problems affect how blood flows through the heart or through the blood vessels near the heart. Some problems may cause blood to flow in a pattern that isn't normal. Others can completely or partially block blood flow.

Some problems are discovered in the fetus during pregnancy. Others aren't found until birth. Still others may not be discovered until a child gets older or even until a child is an adult.

Congenital heart disease causes a wide range of symptoms. Symptoms will depend on what problem your baby has. Babies with congenital heart disease may have one or more of these symptoms:

• Tiring quickly.
• Trouble breathing when the baby feeds or cries.
• Breathing fast during rest or activities.
• Puffiness or swelling of the skin, often around the eyes and in the hands and feet.
• Sweating easily, especially on the head.
• Not gaining weight as they should.
• Fainting or near-fainting spells, especially related to physical activity.
• Having strong-smelling urine or other signs of dehydration.
• Having a bluish tint to the skin, lips, and fingernails that gets worse when the baby cries or eats.
• Growing or developing more slowly than expected. Your baby may be shorter or take longer to learn skills.

In some cases, a child's congenital heart disease may be so mild that symptoms won't appear until the child is a teenager or young adult.

Congenital heart disease in children may be found before or after birth. A fetal echocardiogram may be used to diagnose a problem before birth. A newborn screening test may show a low oxygen level in the blood. Or you may notice symptoms such as trouble eating or not gaining weight. Or your doctor may hear abnormal sounds or murmurs in your baby's heart during a routine checkup.

After a doctor suspects a heart problem, your baby will probably need several tests, such as:

Chest X-ray.

This can show if there might be a problem with your baby's heart or lungs.

Echocardiogram.

The doctor may use this test to see how blood flows through your baby's heart and to look at the valves, thickness, and shape of the heart.

Cardiac catheterization.

This test measures blood pressure in the heart and heart arteries and can show how well the heart is pumping.

Treatment is based on the type of problem. Some types of congenital heart disease get better on their own and may not need treatment. Your child's age, size, and general health also are important.

A child may need:

• Medicines. Medicine may be used to help treat certain types of congenital heart disease, help relieve symptoms, or prevent other problems.
• Cardiac catheterization. The doctor threads a thin, flexible tube (catheter) through a blood vessel—typically in the groin—and into the heart. Some problems can be repaired using this procedure.
• Surgery to repair the problem. A baby with a large or complex problem may need one or more heart surgeries.

Your child will also need regular visits to a pediatric cardiologist.

Ways that you can help your child include:

• Working with a registered dietitian if your child has trouble eating. Some children may have a hard time eating and getting enough calories.
• Giving medicines. Be sure you know how to give your child's medicines safely.
• Preventing infections. Your child may need antibiotics before certain dental procedures. Make sure that your child gets the recommended childhood vaccines.
• Caring for a child in the hospital. Take some of your child's familiar things to the hospital, such as favorite toys or blankets.
• Helping your child be active. Most children can exercise without limitations. Your child's doctor will let you know if your child needs to avoid certain types of activities.
• If your child needs oxygen, learning when and how to give your child oxygen.
• Caring for yourself. Taking good care of your own health will help you take care of your child.