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 attach to the chest and sometimes the arms or legs. Wires connect the patches to a computer, which prints or displays results. An ECG can help diagnose irregular heart rhythms.
• Chest X-ray. A chest X-ray shows the condition of the heart and lungs. It can tell if the heart is enlarged or if the lungs have extra blood or other fluid. These could be signs of heart failure.
• Pulse oximetry. A sensor placed on the fingertip records 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. It's often done to examine the aortic valve.

• Exercise stress tests. These tests often involve walking on a treadmill or riding a stationary bike while the heart activity is checked. Exercise tests can show how the heart responds to physical activity. If you can't exercise, you might be given 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, which allows for accurate measurement of the heart chambers.
• Cardiac catheterization. In this test, a thin, flexible tube called a catheter is inserted into a blood vessel, usually in the groin area, and guided to the heart. This test can provide detailed information on blood flow and how the heart works. Certain 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.

Treatment

A person born with a congenital heart defect can often be treated successfully in childhood. But sometimes, the heart condition may not need repair during childhood or the symptoms aren't noticed until adulthood.

Treatment of congenital heart disease in adults depends on the specific type of heart condition and how severe it is. If the heart condition is mild, regular health checkups may be the only treatment needed.

Other treatments for congenital heart disease in adults may include medicines and surgery.

Medications

Some mild types of congenital heart disease in adults can be treated with medicines that help the heart work better. Medicines also may be given to prevent blood clots or to control an irregular heartbeat.

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 repaired using thin, flexible tubes called catheters. Such treatments let doctors fix the heart without open-heart surgery. The doctor inserts 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. If catheter treatment can't fix congenital heart disease, open-heart surgery may be needed. 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

Adults with congenital heart disease are at risk of developing complications — even if surgery was done to repair a defect during childhood. Lifelong follow-up care is important. Ideally, a doctor trained in treating adults with congenital heart disease should manage your care. This type of doctor is called a congenital cardiologist.

Follow-up care may include blood and imaging tests to check for complications. How often you need health checkups depends on whether your congenital heart disease is mild or complex.

Lifestyle and home remedies

If you have congenital heart disease, lifestyle changes may be recommended to keep the heart healthy and prevent complications.

Coping and support

You may find that talking with other people who have congenital heart disease brings you comfort and encouragement. Ask your healthcare team if there are any support groups in your area.

It also may be helpful to become familiar with your condition. You want to learn:

• The name and details of your heart condition and how it's been treated.
• Symptoms of your specific type of congenital heart disease and when you should contact your healthcare team.
• How often you should have health checkups.
• Information about your medicines and their side effects.
• How to prevent heart infections and whether you need to take antibiotics before dental work.
• Exercise guidelines and work restrictions.
• Birth control and family planning information.
• Health insurance information and coverage options.

Preparing for your appointment

If you were born with a heart condition, make an appointment for a health 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 health 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 in advance, such as avoiding food or drinks for a short period of time. Make a list of:

• Your symptoms, if any, including those that may seem unrelated to congenital heart disease, and when they began.
• Important personal information, including a family history of congenital heart defects and any treatment you received as a child.
• All medicines, vitamins or other supplements you take. Include those bought without a prescription. Also include the dosages.
• Questions to ask your healthcare team.

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

• How often do I need tests to check my heart?
• Do these tests require any special preparation?
• How do we monitor for complications of congenital heart disease?
• If I want to have children, how likely are they to have a congenital heart defect?
• Are there diet or activity restrictions I need to follow?
• I have other health conditions. How can I best manage these conditions together?
• Are there brochures or other printed material that I can have? What websites do you recommend?

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?
• Does anything seem to improve your symptoms?
• What, if anything, makes your symptoms worse?
• What's your lifestyle like, including your diet, tobacco use, physical activity and alcohol use?