Overview

Congenital heart disease is one or more problems with the heart's structure that exist since birth. Congenital means that you're born with the defect. Congenital heart disease, also called congenital heart defect, can change the way blood flows through your heart. Some congenital heart defects might not cause any problems. Complex defects, however, can cause life-threatening complications.

Advances in diagnosis and treatment have allowed babies with congenital heart disease to survive well into adulthood. Sometimes, signs and symptoms of congenital heart disease aren't seen until you're an adult.

If you have congenital heart disease you likely will need care throughout your life. Check with your doctor to determine how often you need a checkup.

Adult congenital heart disease: What patients and families should know

Types

Symptoms

Some congenital heart defects cause no signs or symptoms. For some people, signs or symptoms occur later in life. And symptoms can return years after you've had treatment for a heart defect.

Common congenital heart disease symptoms in adults include:

  • Abnormal heart rhythms (arrhythmias)
  • A bluish tint to the skin, lips and fingernails (cyanosis)
  • Shortness of breath
  • Tiring quickly upon exertion
  • Swelling of body tissue or organs (edema)

When to see a doctor

If you're having worrisome symptoms, such as chest pain or shortness of breath, seek emergency medical attention.

If you have signs or symptoms of congenital heart disease or were treated for a congenital heart defect as a child, make an appointment to see your doctor.

Causes

Researchers aren't sure what causes most types of congenital heart disease. Some congenital heart diseases are passed down through families (inherited).

To understand congenital heart disease, it helps to know how the heart works.

  • The heart is divided into chambers (ventricles) — two on the right and two on the left.
  • The right side of the heart moves blood to the lungs through blood vessels (pulmonary arteries).
  • In the lungs, blood picks up oxygen and then returns to the left side of your heart through the pulmonary veins.
  • The left side of the heart then pumps the blood through the aorta and out to the rest of the body.

Congenital heart disease can affect any of these heart structures, including the arteries, valves, chambers and the wall of tissue that separates the chambers (septum).

Risk factors

Certain environmental and genetic risk factors might play a role in the development of congenital heart disease, including:

  • Your genes. Congenital heart disease appears to run in families (inherited) and is associated with many genetic syndromes. For instance, children with Down syndrome often have heart defects. Genetic testing can detect Down syndrome and other disorders during a baby's development.
  • German measles (rubella). Having rubella during pregnancy may affect how the baby's heart develops while in the womb.
  • Diabetes. Having type 1 or type 2 diabetes during pregnancy also may affect a baby's heart development. Gestational diabetes generally doesn't increase the risk of congenital heart disease.
  • Medications. Taking certain medications while pregnant can cause congenital heart disease and other birth defects. Medications linked to heart defects include lithium for bipolar disorder and isotretinoin (Claravis, Myorisan, Zenatane, others), which is used to treat acne. Always tell your doctor about the medications you take.
  • Alcohol. Drinking alcohol while pregnant also contributes to the risk of heart defects in the baby.
  • Smoking. A mother who smokes while pregnant increases her risk of having a child with a congenital heart defect.

Complications

Congenital heart disease complications that might develop years after you receive treatment include:

  • Irregular heartbeats (arrhythmias). Arrhythmias occur when the electrical signals that coordinate your heartbeat don't work properly. Your heart may beat too fast, too slowly or irregularly. In some people, severe arrhythmias can cause stroke or sudden cardiac death if not treated. Scar tissue in your heart from previous surgeries can contribute to this complication.
  • Heart infection (endocarditis). Endocarditis is an infection of the inner lining of the heart (endocardium). It generally occurs when bacteria or other germs enter your bloodstream and move to your heart. Untreated, endocarditis can damage or destroy your heart valves or trigger a stroke. If you are at high risk of endocarditis, it's recommended that you take antibiotics one hour before dental cleanings. Regular dental checkups are important. Healthy gums and teeth reduce the risk that bacteria will enter the bloodstream.
  • Stroke. A congenital heart defect can allow a blood clot to pass through your heart and travel to your brain, where it reduces or blocks blood supply.
  • Pulmonary hypertension. This is a type of high blood pressure that affects the arteries in your lungs. Some congenital heart defects send more blood to the lungs, causing pressure to build. This eventually causes your heart muscle to weaken and sometimes to fail.
  • Heart failure. Heart failure (congestive heart failure) means your heart can't pump enough blood to meet your body's needs. Some types of congenital heart disease can lead to heart failure.

Adult congenital heart disease and pregnancy

Women with mild congenital heart disease can have a successful pregnancy. However, some women with complex congenital heart defects are advised against pregnancy.

If you're thinking about becoming pregnant, talk to you doctor about the possible risks and complications. Together you can discuss and plan for any special care you might need during pregnancy.

Prevention

Both men and women with congenital heart disease are at increased risk of passing some form of congenital heart disease to their children. Your doctor might suggest genetic counseling or screening if you plan to have children.

Congenital heart disease in adults care at Mayo Clinic

May 14, 2020
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