Adult Congenital Heart Disease Health Information

An OHSU cardiac specialist points to an image on a computer screen in an exam room

Common conditions

The OHSU Adult Congenital Heart Disease clinic treats more than 40 types of heart problems, from mild to severe. Learn more about common conditions and ways they are treated.

Blood exits your heart through your aortic valve, which releases the blood into your aorta. Your aorta is the main artery that distributes blood through your body. If your aortic valve is shaped differently from normal, it can cause aortic stenosis. In this condition, blood is partly blocked from flowing out of the heart into your aorta. An abnormal aortic valve can also cause aortic regurgitation. In this condition, some of your blood goes back into the heart from the aorta, instead of going to the rest of the body.

Often, these conditions cause no symptoms. But over time, or in severe cases, you could have difficulty breathing, especially after exercise. You might also have chest pain, feel dizzy or both. Your heart specialist might tell ask you to make changes to cope with the problem, such as exercising less. If your condition is very severe, you might need surgery to repair or replace your aortic valve.

Your heart has four sections, or chambers. An atrial septal defect is a hole in the wall between the top two sections. If this hole is small, it might not cause any problems. But a larger hole makes your heart and lungs work harder. You might feel tired, have trouble breathing, or have swelling in your feet, legs, or belly. If you have any of these symptoms, make an appointment with your heart doctor. If the hole is large, your doctor might recommend closing it either through surgery or a cardiac catheterization.

Atrioventricular canal defect, or AV canal defect, is a combination of problems with your heart structure. First, there are holes in the walls between the sections of your heart. These sections are called chambers. Also, there are problems with the valves that let blood flow back and forth between chambers.

You might feel tired, have trouble breathing, or have swelling in your legs and feet or an irregular heartbeat. You might also have pulmonary hypertension. This is high blood pressure in the lungs and nearby areas.

An AV canal defect is usually surgically repaired during childhood. If not, you may be able to have surgery as an adult. Even after surgery, you should see your heart doctor regularly to check for problems and treat them.

Your aorta is the largest blood vessel in your body. It sends blood from your heart to the rest of your body. If part of the aorta is narrow, this makes it hard for blood to pass through. Doctors call this condition coarctation of the aorta. It can strain your heart muscle and cause high blood pressure.

Doctors can repair coarctation of the aorta in a procedure called cardiac catheterization. In this procedure, a surgeon inserts a very thin tube (stent) to widen the narrow part of your aorta. In some cases, surgery is require instead. After surgery or a stent, you must see your heart doctor for checkups at least once a year, and have imaging tests that show your aorta. You might also need to take blood pressure medication before and after surgery.

Your heart has four different sections, or “chambers.” The “door” between the upper right (right atrium) and lower right (right ventricle) is called the tricuspid valve. If you have a condition called Ebstein's anomaly, your tricuspid valve is not shaped correctly. It is also a bit lower than normal. These differences make it harder for blood to flow normally in the heart.

In this condition, you might get tired when you exercise. Or you might have swelling in your belly and legs, or an irregular heart rhythm. In the most severe cases, you might need surgery to repair or replace your tricuspid valve. If you have Ebstein's anomaly, you should see your congenital heart disease specialist regularly. Your specialist can keep track of your condition with echocardiograms and other tests.

Your aorta is the largest blood vessel you have, and it carries blood from your heart to the rest of your body. But before birth, and for a few days after, there is also a connection to your lungs.

This blood vessel is called the ductus arteriosis. After birth, you do not need it any more. Normally, it closes up in a few days. If not, doctors call it patent ductus arteriosus, or PDA.

If your PDA is small, it might not cause any problems. But if it is large, it can make your heart work too hard. It can also damage your lungs. You need a procedure to close it, usually by putting in something to plug the opening. After this, you should see your heart doctor as often as recommended.

Your heart has four different sections, or “chambers.” The one on the lower right side is called the right ventricle. It sends blood into your lungs, where the blood picks up oxygen to take through your body. The “doorway” between the right ventricle and the lungs is the pulmonary valve. If it gets too narrow, it can stop blood from flowing through properly. This condition is called pulmonary valve stenosis. If the valve lets blood go back into the heart, instead of going to the lungs, this is called pulmonary valve regurgitation. Having these conditions makes your heart work harder to pump out blood. Eventually, the extra effort can damage your heart muscle.

Mild forms of these conditions may not cause serious problem. You might not need treatment. If you have a severe form of pulmonary valve stenosis or regurgitation, you might need surgery or a catheter(thin tube) procedure.

Tetralogy of Fallot is a combination of four heart problems:

  • A hole in the wall between the lower sections of your heart, called the ventricles.
  • Blood flow from your heart to your lungs is partly blocked.
  • The largest blood vessel in your body, the aorta, is slightly misplaced.
  • Your heart muscle is abnormally thick in the lower right section (right ventricle).

Doctors usually find tetralogy of Fallot when you are a baby or young child. The main symptom is blue skin from not enough oxygen in your blood. You need surgery for tetralogy of Fallot usually when you are very young. Rare people can wait until they are adults. You might need more than one surgery in your lifetime.

If you had tetralogy of Fallot, you need to see a heart doctor regularly for tests and checkups. You might also need to take medication to help control your heart rhythm or to help your heart function.

In l–transposition of the great arteries, your aorta (the body's main artery that distributes blood through the body) and your pulmonary artery (which takes blood from the heart to the lungs) have switched places. Your lower heart chambers (ventricles) have also switched places. As a result, though all your blood goes where it is supposed to, your heart muscle has to work harder.

This condition requires regular testing and monitoring throughout your life. Over time, your overworked heart muscle may lead to problems such as heart failure or an abnormal heart rhythm. These conditions are usually treated with medications. You may also require surgery for accompanying conditions such as ventricular septal defector tricuspid regurgitation.

In d–transposition of the great arteries, your aorta (the body's main artery that distributes blood through the body) and your pulmonary artery (which takes blood from the heart to the lungs) have switched places. As a result, most of your body receives blood that is low in oxygen from your right ventricle (the heart's lower right chamber) rather than oxygen-rich blood from your left ventricle (the heart's lower left chamber). Babies born with this condition require immediate corrective surgery. 

If you were born with d –transposition of the great arteries, you may require follow-up procedures in adulthood, as well as medications to control your heart rhythm and blood pressure. You may also need a cardiac pacemaker at some point. You should see your congenital heart disease specialist regularly for tests and monitoring.

ventricular septal defect (VSD) is a hole in the wall separating your lower heart chambers (ventricles). A small hole may cause no problems. However, a larger hole can cause shortness of breath and fatigue, and may lead to complications such as high blood pressure in the lungs and endocarditis (infection in the heart). Severe VSD is usually surgically corrected during childhood or infancy. If your VSD is small, or if it was fixed when you were a child and you have experienced no further problems with it, you need only see your congenital heart disease specialist every few years. If your VSD was repaired in adulthood, more frequent follow-up may be required.

Common questions

Click through the links below to hear OHSU ACHD program experts answer some common questions that patients have.

  • Making the Move to Adult Care
    As a child, parents or caregivers were responsible for managing your heart care. As you transition into adulthood, you start taking charge of your own care, such as appointments, medications, monitoring and treatments. Learn why young adult care for CHD matters, what is different and what resources are available.
  • Pregnancy and Congenital Heart Disease
    The majority of women with congenital heart disease can have safe, successful pregnancies. Whether you are planning for or are currently pregnant, find out how to stay heart-healthy here.
  • Heart Failure and Adult Congenital Heart Disease
    Heart failure is a common complication of adult congenital heart disease. Learn what to look for, tests and treatments you can take to stay safe.

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