Diagnosis

To diagnose congenital heart disease in adults, your health care provider will do a physical exam and listen to your heart with a stethoscope. You will be asked questions about your symptoms and medical and family history.

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

Tests

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

  • Electrocardiogram (ECG). This painless test records the electrical signals in the heart. An ECG can tell how fast or slow the heart is beating. An ECG can help identify irregular heartbeats (arrhythmias).
  • Chest X-ray. A chest X-ray can show changes in the size and shape of the heart and the lungs.
  • Pulse oximetry. A small sensor attached to the finger can estimate how much oxygen is in the blood.
  • Echocardiogram. Sound waves (ultrasound) create images of the moving heart. An echocardiogram can show blood flow through the heart and heart valves. Echocardiograms may also be done while you exercise, typically on a bike or treadmill.
  • Transesophageal echocardiogram. If more-detailed images of the heart are needed, a transesophageal echocardiogram may be done. In this test, a flexible tube containing the transducer is guided down the throat and into the tube connecting the mouth to the stomach (esophagus).
  • Exercise tests or stress tests. These tests often involve walking on a treadmill or riding a stationary bike while the heart is monitored by ECG. Exercise tests help reveal how the heart responds to physical activity.
  • Heart CT scan and heart MRI. These tests create images of the heart and chest. A heart (cardiac) CT scans use X-rays. Cardiac MRI uses a magnetic field and radio waves. For both tests, you lie on a table that typically slides inside a long tubelike machine.
  • Cardiac catheterization. This test can be done to check blood flow and blood pressures in the heart. A doctor gently inserts a catheter into a blood vessel, usually in the groin, and up to the heart. X-rays are used to guide the catheter to the correct position. Sometimes, dye is injected through the catheter. The dye helps blood vessels show up better on the images.

Treatment

Congenital heart disease can often be treated successfully in childhood. However, some types of congenital heart disease may not be serious enough to repair during childhood, but they may cause problems in adulthood.

Treatment of congenital heart disease in adults depends on the severity of the heart condition. Relatively minor congenital heart defects might require only occasional health checkups to make sure the condition doesn't worsen.

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

Medications

Some mild congenital heart defects can be treated with medications that help the heart work better. Medications may also be given to prevent blood clots or to control an irregular heartbeat.

Surgeries and other procedures

Several surgeries and procedures are available to treat adults with congenital heart disease.

  • Implantable heart devices. A device that helps control the heart rate (pacemaker) or that corrects life-threatening irregular heartbeats (implantable cardioverter-defibrillator or ICD) may help improve some of the complications associated 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 allow a repair to be done without open-heart surgery. The health care provider 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 repair the congenital heart defect.
  • Open-heart surgery. If catheter procedures can't fix a congenital heart defect, open-heart surgery may be needed.
  • Heart transplant. If a serious heart defect can't be repaired, a heart transplant might be an option.

Follow-up care

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

Follow-up care may include regular health checkups and occasional bloodwork and imaging exams to screen for complications. How often you'll need to see your health care provider will depend on whether your congenital heart disease is mild or complex.

Clinical trials

Explore Mayo Clinic studies testing new treatments, interventions and tests as a means to prevent, detect, treat or manage this condition.

Coping and support

One important thing to do if you're an adult with congenital heart disease is to become educated about your condition. Topics you should become familiar with include:

  • The name and details of the heart condition and how it's been treated
  • How often you should have health checkups
  • Information about your medications and their side effects
  • How to prevent heart infections (endocarditis), if necessary
  • Exercise guidelines and work restrictions
  • Birth control and family planning information
  • Health insurance information and coverage options
  • Dental care information, including whether you need antibiotics before dental procedures
  • Symptoms of your specific type of congenital heart disease and when you should contact your doctor

Preparing for your appointment

If you have a congenital heart defect, make an appointment with a doctor trained in diagnosing and treating heart conditions (cardiologist) for follow-up care, even if you haven't developed complications.

Here's some information to help you get ready for your appointment.

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 any that may seem unrelated to congenital heart disease, and when they began
  • Key personal information, including a family history of heart defects and treatment you received as a child
  • All medications, vitamins or other supplements you take and their doses
  • Questions to ask your health care provider

For congenital heart disease, questions to ask your care provider include:

  • What's the most likely cause of my symptoms?
  • What tests do I need?
  • What treatments are available? Which do you recommend for me?
  • Are there diet or activity restrictions I need to follow?
  • How often should I be screened for complications from my heart defect?
  • 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 health care provider is likely to ask you questions, including:

  • Do your symptoms come and go, or do you have them all the time?
  • How severe are your symptoms?
  • Does anything seem to improve your symptoms?
  • What, if anything, worsens your symptoms?
  • What's your lifestyle like, including your diet, tobacco use, physical activity and alcohol use?

Congenital heart disease in adults care at Mayo Clinic

April 21, 2022
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