Adult congenital heart disease (ACHD) is a term for conditions that affect your heart’s structure. These heart defects impact blood flow. Symptoms may include fatigue, heart murmur and arrhythmia. Treatment includes observation, medications, implantable devices and surgery. People with ACHD need regular checkups with a cardiologist.
Adult congenital heart disease (ACHD) is an umbrella term for conditions you’re born with that affect your heart’s structure. “Congenital” means that the defect forms while the fetus develops and is present at birth. These conditions impact blood flow through your heart. They’re also called congenital heart defects.
Congenital heart diseases range from mild to serious. Depending on the type of heart disease and its severity, people may not notice any symptoms until they reach adulthood. Other people never notice symptoms at all. And others have these conditions treated as children, only to have symptoms of long-term manifestations as adults.
Advances in diagnosis and treatment have improved outcomes for people with ACHD. More than 90% of people with ACHD treated as children live into adulthood. Whether your ACHD diagnosis happens when you’re a child or an adult, you’ll still need lifelong medical care to help monitor your condition.
Congenital heart diseases can affect any of the structures of your heart, including:
The most common types of adult congenital heart disease include:
If your blood vessels are too narrow at certain points, your heart has to work harder to pump blood. The vessels may also link incorrectly, sending oxygen-poor blood to the body or oxygen-rich blood to the lungs. Common blood vessel defects include:
Your heart valves can be too narrow, not close properly, be completely closed or be misshapen. These conditions make it hard for your heart to pump blood through your body. Common heart valve defects include:
These defects are holes in the wall of tissue between the two upper chambers (atria) or the two lower chambers (ventricles) of the heart. They cause oxygen-rich blood from the lungs to mix with oxygen-poor blood from the body. This means blood leaving the heart may have less oxygen than usual. Common septal defects include:
Cleveland Clinic is a non-profit academic medical center. Advertising on our site helps support our mission. We do not endorse non-Cleveland Clinic products or services. Policy
People of all sexes, ages and races can have adult congenital heart disease. Women have a higher incidence of some conditions including atrial septal defect, mitral valve prolapse and patent ductus arteriosus. Men have a higher incidence of other conditions including aortic coarctation, tetralogy of Fallot and transposition of the great arteries. Some congenital heart defects are more common in people with genetic syndromes, like Down syndrome or Turner syndrome.
About 1.4 million adults in the U.S. have congenital heart disease. The number of people with ACHD continues to increase by about 5% each year.
Researchers aren’t sure exactly what causes adult congenital heart disease. Some ACHD may get passed down through families (inherited). In many cases, ACHD appears in conjunction with genetic diseases or disorders, such as Down syndrome and Turner syndrome.
You may also have a higher risk of ACHD if your birthing parent:
The signs and symptoms of ACHD vary depending on:
Some people with ACHD don’t have any symptoms. If you do have symptoms, they may include:
Your healthcare provider will first ask about your symptoms and medical history. They will do a physical exam and listen to your heart with a stethoscope.
Your provider will use tests such as:
Some minor congenital heart defects may not need treatment. But you will still need regular heart checkups to make sure your condition isn’t getting worse.
ACHD treatment depends on the type and severity of the condition and may include:
Medications: Certain drugs can help your heart work better, including:
Cardiac catheterization: During cardiac catheterization, your provider inserts a thin tube (catheter) through a blood vessel in your groin. They guide the catheter to your heart. This procedure can help repair atrial septal defects. Your provider may also use a catheter with a tiny balloon to widen arteries (angioplasty) or valves (valvotomy).
Surgery: Your surgeon may perform heart valve surgery to repair or replace one or more of your heart valves. This can be open-heart surgery or minimally invasive heart surgery. Your surgeon can also fix more complex congenital heart defects through heart surgery.
Heart transplant: People with life-threatening congenital heart disease may need a complete heart transplant.
Each year, about 40,000 children in the U.S. are born with heart defects. Because it already exists when you are born, you can’t reduce your risk of ACHD.
But if you’re considering getting pregnant, you may want to speak with a genetic counselor. They can help determine the risk of your children developing congenital heart disease. Your healthcare provider might refer you to a specialist in cardiac-obstetrics who can help you assess how safe it is for you to become pregnant with your heart condition, and help make your pregnancy safer.
You can lower your child’s risk of congenital heart disease by taking certain steps during pregnancy:
Overall, you’re at higher risk of ACHD if:
ACHD may lead to complications, including:
The risk of complications is higher if your congenital heart disease was not repaired or treated during childhood.
If you have ACHD, your outlook depends on the type of congenital heart disease, its severity and the treatment.
You can continue to take care of yourself by:
Call 911 immediately if you notice any signs of heart failure such as:
Also, see your healthcare provider if you experience any new or worrying ACHD symptoms.
A note from Cleveland Clinic
Adult congenital heart disease (ACHD) is a term for conditions that affect the structure of your heart. These heart defects impact your blood flow. You have ACHD from birth. You may have fatigue, heart murmur, shortness of breath or no symptoms at all. Your provider can treat ACHD with medications, implantable devices and surgery. If you have mild ACHD, you may not need treatment. Regardless of the severity, you should see a cardiologist for regular checkups. Many people with ACHD lead full, active lives.
Last reviewed by a Cleveland Clinic medical professional on 08/01/2022.
Learn more about our editorial process.