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Congenital heart disease in adults

Congenital heart disease (congenital heart defect) is an abnormality in your heart's structure that you're born with. Although congenital heart disease is often considered a childhood condition, advances in surgical treatment mean most babies who once died of congenital heart disease survive well into adulthood.

While medical advances have improved, many adults with congenital heart disease may not be getting proper follow-up care. If you had a congenital heart defect repaired as an infant, you likely still need care as an adult.

Find out if and when you should check with your doctor, if you're likely to have complications, or if you're at greater risk of other heart problems as an adult.

Symptoms Causes Risk factors Complications

Symptoms or signs of congenital heart disease may not show up until later in life. They may recur years after you've had treatment for a heart defect. Some common congenital heart disease symptoms you may have as an adult include:

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

When to see a doctor

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

If you have any of the 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.

How the heart works

The heart is divided into four hollow chambers, two on the right and two on the left. In performing its basic job — pumping blood throughout the body — the heart uses its left and right sides for different tasks.

The right side of the heart moves blood to the lungs through vessels called pulmonary arteries. In the lungs, blood picks up oxygen and then returns to the heart's left side 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.

How heart defects develop

Most heart defects develop when a baby is still in the womb. During the first month of gestation, the fetal heart begins beating. At this point, the heart is just a vaguely heart-shaped tube. Soon the structures that will form into the heart's two sides and the large blood vessels that carry blood in and out of them develop.

It's usually at this point in a baby's development that heart defects may begin to develop. Researchers aren't sure exactly what causes defects to begin, but they think some medical conditions, medications and genetics may play a role.

Why congenital heart disease resurfaces in adulthood

Some adults may find that problems with their heart defects arise later in life, even if their defects were treated in childhood. This is because heart defects are seldom cured — they are often repaired, so your heart function is improved, but it's often not completely normal.

There are many reasons why heart defects re-emerge in adults. In some cases, the treatment you received in childhood may have been successful then, but the problem worsens later in life. It's also possible that problems in your heart, which weren't serious enough to repair when you were a child, have worsened and now require treatment.

There are other complications of childhood surgeries to correct congenital heart disease that can occur later in life. Many treatments to repair heart defects may leave scar tissue behind in your heart that causes an increased chance of abnormal heart rhythm (arrhythmia).

Congenital heart disease often results from problems early in your development, often before you were born. Certain environmental and genetic risk factors may play a role in the development of your heart defect. They include:

  • German measles (rubella). If your mother had rubella while pregnant, this could have affected your heart development.
  • Diabetes. If your mother had type 1 or type 2 diabetes, it may have interfered with the development of your heart. Gestational diabetes generally doesn't increase the risk of developing a heart defect.
  • Medications. Taking certain medications while pregnant is known to cause birth defects, including congenital heart defects.

    Medications that increase risk include the drug isotretinoin, which is used to treat acne, and lithium, which is used to treat bipolar disorder, a condition that causes intense mood swings or hypomania. Drinking alcohol while pregnant also may contribute to the risk of heart defects.
  • Heredity. Congenital heart disease appears to run in families and is associated with many genetic syndromes.

    Half the children with Down syndrome — which is caused by an extra 21st chromosome (trisomy 21) — have heart defects. A missing piece (deletion) of genetic material on chromosome 22 also causes heart defects. Genetic testing can detect such disorders during a baby's development.

Congenital heart disease complications may not develop until years after initial treatment. Because the severity of congenital heart disease varies widely, the range of possible complications does, too. However, some common problems or complications that may develop in adulthood include:

  • Abnormal heart rhythms (arrhythmias). Heart rhythm problems (arrhythmias) occur when the electrical impulses in your heart that coordinate your heartbeats don't function properly, causing your heart to beat too fast, too slow or irregularly. Heart rhythm problems are common in people who have congenital heart disease.

    This can be because your heart defect itself interferes with the normal electrical impulses or because previous corrective surgery left scar tissue that can cause arrhythmias.

    In some people, these arrhythmias can become severe, even causing sudden cardiac death if not properly treated. Treatment is available for arrhythmias, so it's important you seek appropriate follow-up care.
  • Heart infections (endocarditis). The inside of your heart contains four chambers and four valves, which are lined by a thin membrane called the endocardium. Endocarditis is an infection of this inner lining.

    Endocarditis generally occurs when bacteria or other germs from another part of your body, such as your mouth, enter your bloodstream and lodge in your heart. Left untreated, endocarditis can damage or destroy your heart valves or trigger a stroke. If you have a prosthetic heart valve or your heart was repaired with prosthetic material, or if your heart defect wasn't completely repaired, your doctor may prescribe antibiotics to lower your risk of developing endocarditis.
  • Stroke. Stroke occurs when the blood supply to a part of your brain is interrupted or severely reduced, depriving brain tissue of oxygen and nutrients.

    Some congenital heart defects increase your risk of stroke due to an abnormal connection in the heart allowing a blood clot from a vein to pass through your heart and travel to your brain. Certain heart arrhythmias also can increase your chance of blood clot formation leading to a stroke.
  • Heart failure. Heart failure, also known as 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.

    Over time, certain conditions such as coronary artery disease or high blood pressure gradually sap your heart of its strength, leaving it too weak or too stiff to fill and pump efficiently.

    Medications can improve the signs and symptoms of chronic heart failure and lead to improved survival. Lifestyle changes — such as exercising, eating food with less salt (sodium), managing stress and losing excess weight — also can help prevent fluid buildup and improve your quality of life.
  • Pulmonary hypertension. This is a type of high blood pressure that affects only the arteries in the lungs.

    Some congenital heart defects can cause more blood to flow to the lungs, increasing pressure. As the pressure builds, your heart's lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing the heart muscle to weaken and sometimes to fail. If this problem isn't caught early, permanent lung artery damage can occur.
  • Heart valve problems. In some types of congenital heart disease, the heart valves are abnormal.

    Some heart defects may be minor early in life but may cause problems in adulthood. In other cases, a valve that has been repaired or replaced in childhood may require further surgery as an adult. Other types of surgical or catheter-based treatments performed in childhood also may require repeat procedures later in life.
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