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Congenital Heart Defects


Topic Overview

What are congenital heart defects?

Congenital heart defects are problems with how a baby's heart forms. "Congenital" means that the heart problem develops before the baby is born or at birth.

Most congenital heart defects affect how blood flows through the heartClick here to see an illustration. or through the blood vessels near the heart. Some defects may cause blood to flow in a pattern that isn't normal. Others can completely or partially block blood flow.

There are many different types of congenital heart defects. 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.

Some defects are discovered in the fetus (developing baby) while a woman is pregnant. Others are not found until birth. Still others may not be discovered until your child gets older or even until he or she is an adult.

No matter when a heart defect is discovered, having a child with a heart problem is very stressful. Dealing with the fear and uncertainty may seem overwhelming, especially when you have a fragile newborn. It may help you to learn as much as you can about your child's treatment and to talk to your doctor and other parents who have a child with similar problems.

What causes the defects?

No one knows exactly what causes most congenital heart defects. Genes passed down from a parent are a possible cause. Viral infections also may play a role. For example, if a woman gets German measles (rubella) while she is pregnant, it may cause problems with how her baby's heart develops. Women who have diabetes have a greater chance of having a child with a congenital heart defect.

Congenital heart defects are more common in babies who are born with genetic conditions such as Down syndrome.

Taking some prescription or other medicines during pregnancy may cause congenital heart defects. Women who use illegal "street" drugs or who drink alcohol during pregnancy have a higher risk of having a baby with a congenital heart defect.

What are the symptoms?

Symptoms of congenital heart defects will depend on what problem your baby has. Babies with congenital heart defects may have one or more of these symptoms:

  • Tiring quickly
  • Difficulty breathing
  • Puffiness or swelling
  • Sweating easily
  • Having dark, strong-smelling urine or other signs of dehydration
  • Not gaining weight as they should
  • A bluish tint to the skin, lips, and fingernails that becomes worse while eating or crying
  • Fainting or near-fainting spells, especially related to physical activity

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

How are congenital heart defects diagnosed?

In most cases, congenital heart defects are found at birth or during a baby's first few months.

You may find that your baby has trouble eating or isn't gaining weight. Or your doctor may hear abnormal sounds or murmurs in your baby's heart during a routine checkup. The first sign may be a bluish tint to the baby's skin.

After a doctor suspects a heart defect, your baby will probably need several tests, such as blood tests, an echocardiogram, and possibly a heart catheterization. The doctor may use the echocardiogram to check blood flow through your baby's heart and to look at the valves, thickness, and shape of the heart. A heart catheterization measures blood pressure in the heart and heart arteries and can show how well the heart is pumping.

Having your child go through this testing can be very scary. Don't be afraid to ask as many questions as you need to ask to feel comfortable. Talk to your doctor and the nurses. And talk to the people who are doing the testing.

How are they treated?

Some defects get better on their own and may not need treatment. Your baby's or child's treatment will depend on the type of defect.

Medicines may be used to help the heart work better. Medicines may also treat symptoms until the defect is repaired.

Some defects can be fixed by using a thin, flexible tube called a catheter. This procedure doesn't require opening up the chest. The doctor threads the catheter through a blood vessel—typically in the groin—and into the heart. There, he or she uses the catheter to close holes or open narrowed blood vessels or valves.

If a baby has a large or complex defect, the baby may need one or more open-heart surgeries. The surgery may be done right away, done over several steps, or delayed until the baby is stronger. Sometimes surgery is delayed if the baby is premature or until the baby is strong enough to handle the surgery. In some cases, the child may need different types of surgery over time as he or she grows.

In rare cases, a heart defect may be so serious that a heart transplant is needed.

Frequently Asked Questions

Learning about congenital heart defects:

Being diagnosed:

Getting treatment:

Ongoing concerns:

Living with congenital heart defects:

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