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.

Symptoms of congenital heart disease will depend on what problem your baby has. Your baby may have symptoms such as tiring quickly, sweating easily, or having trouble breathing. Or your baby may not have symptoms at birth but may have them later.

Testing for congenital heart disease can be done during pregnancy or after a baby's birth. In many cases, congenital heart disease is found at birth or during a baby's first few months.

Tests during pregnancy

A fetal echocardiogram is the best test before a baby's birth. The test uses sound waves to take pictures of the baby's heart. The fetal echocardiogram may be done if:

• A parent has congenital heart disease.
• The baby may have been exposed to certain chemicals during pregnancy.
• The parent has taken medicines during pregnancy that may increase the baby's risk of developing heart problems.
• Other exams or tests show signs that a baby may have a problem related to the heart's structure.

Tests after a baby is born

A newborn screening test may find a heart problem. The test is called an oximetry test. It checks the oxygen level in the blood.

Congenital heart disease can also be found in the first month after a baby is born. Your doctor may take a medical history, do a physical exam, and ask about the baby's symptoms, appetite, and other habits. Your baby will get other tests to find a heart problem.

Not all problems are found when a child is very young. Some problems don't cause symptoms and aren't life-threatening. These problems may not be found until the teen years or later.

Tests that can help diagnose a heart problem include:

• Echocardiogram. The doctor may use this test to see how blood flows through your child'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. It can also show how well the heart is pumping.

More tests may be needed, depending on the symptoms and type of problem. These may include:

• Chest X-ray. This is to check the size and blood vessels of the heart.
• Electrocardiogram (ECG, EKG). This test checks for irregular heart rhythms (arrhythmias) that may be related to congenital heart disease.
• Blood tests. These check for anemia, polycythemia, or levels of certain chemicals in the blood.
• Oximetry. This is to see whether oxygen-poor blood is being pumped to the body. The amount of oxygen in the blood can also be measured by an arterial blood gas (ABG).
• CT scan or MRI of the heart and major blood vessels. This is to view abnormal heart structures and/or blood vessels. During these tests, your child will probably be given medicine to help your child relax and sleep.

Your child's treatment will depend on the type of congenital heart disease. Some problems get better on their own and may not need treatment. Medicine may be used to treat a problem or prevent complications. Some problems are repaired using a thin tube called a catheter. More complex problems may need surgery.

• Have your child take medicines exactly as prescribed. Call your doctor if you think your child is having a problem with a medicine.
• If your child has trouble eating, work with a registered dietitian. Some children may have a hard time eating and getting enough calories.
• Make sure that your child gets all the recommended vaccines, which helps keep your child healthy. Make sure family members and people who are in close contact with your child also get recommended vaccines.
• Congenital heart disease can increase your child's risk of an infection in the heart. Talk to your doctor about your child's risk. Your child may need to take antibiotics before certain dental or surgical procedures to prevent infection. Also be sure your child takes good care of their teeth and gums.
• Ask for support. Your child's care team can help you and your child. They can refer you to a counselor. They can also give you information for support groups of parents who have children with congenital heart disease.
• Learn how to do CPR and rescue breathing. It is important to know this in case your child stops breathing.
• Learn what to do if your child has "blue spells." These may happen if the blood going from the heart to the body is a mix of oxygen-poor and oxygen-rich blood. The body may not get enough oxygen. When this occurs, a child can have a bluish tint to the skin, lips, or fingernails. Tell your child's doctor when a blue spell occurs.