Congenital heart disease in adults

Diagnosis

To diagnose congenital heart disease in adults, your healthcare professional examines you and listens to your heart with a stethoscope. You are usually asked questions about your symptoms and medical and family history.

Tests

Tests are done to check the heart's health and look for other conditions that may cause similar symptoms.

Tests to diagnose or confirm congenital heart disease in adults include:

• Electrocardiogram (ECG). This quick test records the electrical activity of the heart. It shows how the heart is beating. Sticky patches with sensors called electrodes go on the chest and sometimes the arms or legs. Wires connect the patches to a computer, which prints or shows results. An ECG can help diagnose irregular heart rhythms linked to congenital heart disease.
• Chest X-ray. A chest X-ray shows the heart and lungs. It can tell whether the heart is larger than usual or if the lungs have extra fluid. These could be signs of heart failure.
• Pulse oximetry. A small clip placed on the fingertip measures how much oxygen is in the blood. Too little oxygen may be a sign of a heart or lung condition.

• Echocardiogram. An echocardiogram uses sound waves to create pictures of the beating heart. It shows how blood flows through the heart and heart valves. A standard echocardiogram takes pictures of the heart from outside the body.

  If a standard echocardiogram doesn't give as many details as needed, a healthcare professional may do a transesophageal echocardiogram (TEE). This test gives a detailed look at the heart and the body's main artery, called the aorta. A TEE creates pictures of the heart from inside the body.

• Exercise stress tests. You walk on a treadmill or ride a stationary bike while a healthcare professional watches your heart activity. An exercise stress test shows how the heart responds to physical activity. If you can't exercise, you might get medicines that affect the heart like exercise does. An echocardiogram may be done during an exercise stress test.
• Heart MRI. A heart MRI, also called a cardiac MRI, may be done to diagnose and look at congenital heart disease. The test creates 3D pictures of the heart. These pictures help show the size of the heart's chambers and how well the heart valves work.
• Heart CT. Also called a cardiac CT, this test may be done to find and look at changes in the heart. It uses several X-rays to make detailed pictures of the heart and the heart's arteries.
• Cardiac catheterization. In this test, a doctor places a thin, soft tube called a catheter into a blood vessel, usually in the wrist or groin area, and guides it to the heart. This test can give details about blood flow and how the heart works in people with congenital heart disease. Some heart treatments can be done during cardiac catheterization.

Some or all of these tests also may be done to diagnose congenital heart defects in children.

Tests for adult congenital heart disease and pregnancy

Some types of congenital heart disease can run in families. That means they can be inherited. Depending on your congenital heart condition, your healthcare professional may suggest genetic testing or screening during pregnancy.

If you are thinking about pregnancy, it's best to talk with your healthcare team before you get pregnant. Your team can help you understand any pregnancy risks and review your medicines. Together, you can plan for any special care needed during pregnancy and delivery. It may be possible to have a successful pregnancy with congenital heart disease. But it depends on your specific type of congenital heart disease and how severe it is. Sometimes a healthcare professional may tell you not to get pregnant.

Before you become pregnant, your healthcare professional can explain the chance that your baby could be born with a heart condition. You can have an ultrasound to check the baby's heart between 18 and 22 weeks of pregnancy. This test is called a fetal echocardiogram. It can show whether the baby has a congenital heart defect.

Treatment

Some people born with a congenital heart defect can often be treated successfully during childhood. But some heart defects do not need treatment when a person is young. Some types of congenital heart disease do not cause symptoms until adulthood.

Treatment for adults with congenital heart disease depends on the type of heart condition and how serious it is. If the condition is mild, regular checkups may be the only care needed. Other treatments for congenital heart disease in adults may include medicines and surgery.

Medications

There is not one medicine that everyone with adult congenital heart disease takes. The type of medicine depends on the type of congenital heart disease and any complications.

Some mild types of congenital heart disease in adults can be treated with medicines that help the heart work better. Other medicines may be given to:

• Prevent blood clots.
• Control an irregular heartbeat.
• Help the body get rid of extra fluid.
• Lower high blood pressure in the lung arteries.

Surgeries and other procedures

Some adults with congenital heart disease may need a medical device or heart surgery.

• Implantable heart devices. A pacemaker or an implantable cardioverter-defibrillator (ICD) may be needed. These devices help improve some of the complications that can occur with congenital heart disease in adults.
• Catheter-based treatments. Some types of congenital heart disease in adults can be fixed using thin, soft tubes called catheters. Such treatments let doctors fix the heart without open-heart surgery. The doctor places a catheter through a blood vessel, usually in the groin, and guides it to the heart. Sometimes more than one catheter is used. Once in place, the doctor threads tiny tools through the catheter to fix the heart condition.
• Open-heart surgery. Some people with adult congenital heart disease may need open-heart surgery. The type of heart surgery depends on the specific heart condition.
• Heart transplant. If a serious heart condition can't be treated, a heart transplant might be needed.

Follow-up care and management

Some adults who were treated for congenital heart disease as children may stop having regular checkups. But lifelong follow-up care is important, even if you feel well. Adults born with complex or critical congenital heart disease may need specialized treatments or follow-up care.

Adults with congenital heart disease can develop complications, even if surgery was done to fix the heart during childhood. Many adults with congenital heart disease may feel OK, but their hearts may not be working as they should. They may need medicine to help.

Ideally, a doctor trained in treating adults with congenital heart disease should manage your care. This type of doctor is called an adult congenital cardiologist. Many adults with congenital heart disease do best with care from this type of doctor. This is especially important if:

• Your heart condition is moderate or complex.
• You've had heart surgery.
• You have complications such as irregular heartbeats, heart failure or pulmonary hypertension.

Follow-up care may include blood and imaging tests to check for complications. It also may include exercise tests and more procedures or surgery, if needed. How often you need health checkups depends on whether your congenital heart disease is mild or complex. Ask your healthcare team what is right for you.

Some adults with congenital heart disease may need treatment for heart conditions related to aging. These conditions are called acquired heart diseases. They are not conditions that a person is born with. An example is coronary artery disease.

Lifestyle and home remedies

If you have adult congenital heart disease, lifestyle changes can help support your heart health and lower your risk of other heart conditions.

To protect the heart and keep it healthy:

• Don't smoke.
• Eat healthy foods and use less salt.
• Stay active in ways your healthcare team says are safe.
• Manage weight.
• Get 7 to 9 hours of sleep daily.
• Manage blood pressure, cholesterol and blood sugar.
• Manage emotional stress.

Coping and support

Living with adult congenital heart disease can affect more than the heart. Many people with adult congenital heart disease find it helpful to have regular checkups for depression, anxiety, and challenges with thinking, learning or memory.

If you have changes in your mood, sleep or concentration, talk with your healthcare team. Support and treatment can help.

You may feel better by talking with other people who have congenital heart disease. Ask your healthcare team whether there are any support groups in your area. Some organizations offer information, support and resources for adults with congenital heart disease and their families. An example is the Adult Congenital Heart Association (ACHA).

It also can help to learn about your heart condition. Try to understand:

• The name of your heart condition and how it's been treated.
• The symptoms of your condition and when you should contact your healthcare team.
• How often you need checkups.
• The medicines you take and their side effects.
• How to lower your risk of heart infections and whether you need antibiotics before dental care.
• What types of exercise and work activities are right for you.
• Birth control and family planning information.
• How your health insurance works and what it covers.

Preparing for your appointment

If you were born with a heart condition, make an appointment for a checkup with a doctor trained in treating congenital heart disease. Do this even if you aren't having any complications. It's important to have regular checkups if you have congenital heart disease.

What you can do

When you make the appointment, ask if there's anything you need to do ahead of time. For example, you might be told not to eat or drink before some tests. Make a list of:

• Your symptoms, even ones that may not seem related to your heart condition, and when they started.
• Important personal information, including any family history of congenital heart disease and any treatment you had for congenital heart defects as a child.
• All medicines, vitamins and other supplements you take. Include those bought without a prescription. Also include the dosages.
• Questions to ask your healthcare team.

Making a list of questions can help you and your healthcare professional make the most of your time together. You might want to ask:

• How often do I need tests to check my heart?
• Do I need to do anything special before these tests?
• How do I watch for possible complications of congenital heart disease?
• If I want to have children, what is the chance they could be born with a heart condition?
• Do I need to change my diet or activities?
• I have other health conditions. How can I best manage these conditions together?
• Do you have any printed information that I can take home with me? What websites do you recommend?

If pregnancy is possible for you, ask what your pregnancy risks are and whether pregnancy counseling is right for you.

Don't hesitate to ask other questions.

What to expect from your doctor

Your healthcare team may ask you many questions, including:

• Do your symptoms come and go, or do you have them all the time?
• How bad are your symptoms?
• What, if anything, makes your symptoms better?
• What, if anything, makes your symptoms worse?
• Do you smoke or have you ever smoked?
• Can you describe your daily habits, such as your diet, physical activity and alcohol use?