Adult Congenital Heart Disease | Heart and Vascular

Heart and Vascular Care

Adult Congenital Heart Disease

Our nationally renowned pediatric and adult heart and vascular experts use the latest treatments for simple and complex congenital heart disease.

Medically reviewed on June 26, 2023.

Female nurse listening to the heart of a male patient in an exam room with a stethoscope.

Compassionate Care for Congenital Heart Disease

As part of an academic medical center, our Adult Congenital Heart Disease Program offers a wide range of treatments, including some only available through clinical trials. Our world-class team of experts work together with you to find the best possible treatment.  

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What Is Adult Congenital Heart Disease?

Adult congenital heart diseases, or structural heart diseases, are heart anomalies that develop before birth. Sometimes they are called heart defects. About one in 125 people are born with a congenital heart disease.

Congenital heart diseases affect the structure of your heart and how it functions. These changes can also interfere with your heart’s electrical system, which controls your heartbeat.

The main types of congenital heart anomalies include:

  • Blood vessels: Blood vessel differences affect the large vessels that carry blood to and from your heart. They may be too narrow or have incorrect linkages.
  • Chambers: The heart has four chambers, which may be malformed in people with congenital defects. A chamber may be too small to pump blood properly.
  • Heart valve: Heart valves keep blood flowing in the right direction. Abnormal valves may be stiff, narrow, malformed or missing.
  • Septum: The septum separates the left and right sides of your heart. Septal anomalies are holes in this wall of tissue.

Congenital heart diseases range in severity from mild to severe. Some people receive treatment when they are children or adults. Others may never develop symptoms or need treatment.

If you have a congenital heart disease, you may require long-term care to monitor previous treatments. Your physician will also track your health closely. Congenital heart disease can increase your risk of other medical conditions. 

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Adult Congenital Heart Disease Symptoms

Symptoms of adult congenital heart disease depend on the type of anomaly, its severity and whether you have related heart conditions.

If your heart anomaly leads to other health problems, you may have more symptoms. Learn about the signs of related conditions, such as heart failure, arrhythmia and pulmonary hypertension. 

Common Symptoms

Mild heart differences may not cause any symptoms. Over time, or if an anomaly is more serious, you may develop symptoms, such as: 

  • Blue tone in the nails, lips or skin
  • Dizziness or passing out
  • Heart murmur — a whooshing noise during heartbeats
  • Irregular or racing heartbeats (heart palpitations)
  • Persistent fatigue or weakness
  • Shortness of breath, especially during physical activity
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Causes of Adult Congenital Heart Disease

The exact cause of adult congenital heart disease is not known. Researchers believe genetics and exposure to harmful substances in the environment before birth may play a role.

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Diagnosing Adult Congenital Heart Disease

To diagnose adult congenital heart disease, your physician reviews your symptoms and medical and family history.

You receive a physical exam and may have one or more tests, such as:

  • Electrocardiogram (EKG): This test measures the electrical activity of your heart. An EKG taken while you exercise is called an exercise stress test. It measures how well your heart responds to stress. 
  • Electrophysiology study: This test helps find the source of irregular heartbeats. Your physician inserts a thin, hollow tube (catheter) into a blood vessel in your leg, arm or neck. The catheter helps your physician place electrodes in your heart to measure electrical activity. 
  • Holter monitor: This portable monitor records your heartbeat over a 24-hour period. 
  • Pulse oximetry: This test measures the amount of oxygen in your blood.

You may also undergo imaging tests, such as: 

  • Cardiac catheterization: This test uses a catheter to take measurements and pictures inside your heart.  
  • Echocardiogram: This ultrasound test creates a movie of your heart. This can show problems with its structure and function. For a clearer view, your physician may use a transesophageal echocardiogram (TEE). In TEE, your physician inserts the ultrasound probe down your esophagus.  
  • MRI, CT or X-ray: These tests allow your physician to see the details of your heart, blood vessels and lungs.  

Adult Congenital Heart Disease Treatment

Improved diagnosis and treatments are helping people with congenital heart disease live longer and healthier. You may have received treatment as a child. As you age, you may develop further problems with your heart that require additional interventions. Our program strives to provide a smooth transition from childhood to adulthood with lifelong, multidisciplinary care. 

Diet and Lifestyle Changes

Diet, exercise, smoking and other lifestyle choices play an important role in your cardiovascular health. If you have a congenital heart condition, a healthy lifestyle can protect your heart and slow disease progression.

Medications

Your cardiologist may prescribe medications to help your heart function better. Examples include medications to treat heart rhythm problems (arrhythmias), pulmonary hypertension and heart failure.

Transcatheter Procedures

We offer minimally invasive catheter-based procedures to repair heart valves and close holes in your heart. These procedures require only a small incision, so you experience faster recovery times compared with open heart surgery.

Electrophysiology Treatments

About 40% of adults with congenital heart disease develop some electrical issues of the heart. Our experts in adult congenital arrhythmias treat complex electrical problems using leading-edge ablation techniques. We also offer pacemaker implants, including leadless and conduction system pacemakers.

Cardiac Surgery

Some heart anomalies require open-chest surgery to close holes, repair structural problems or replace heart valves. We also fix previously repaired anomalies. Our cardiovascular surgeons have extensive experience repairing complex structural heart disease. Their skill is nationally recognized and in demand by other medical centers who ask us to train their physicians.

Pregnancy Care

If you have adult congenital heart disease, pregnancy poses additional risks to you and your baby. Whether you can have a successful pregnancy depends on your heart function, medications, overall health and past treatments. Our maternal-fetal medicine specialists can help you understand your risks and manage your pregnancy.

Cardiac Rehab

Our cardiac rehab program — the first in the region — helps you recover after a heart procedure. You receive care from a highly skilled team of heart, exercise, nutrition and mental health experts. Together, they work with you to improve your strength and overall health. With cardiac rehab, you may also experience better mood and less stress.

"The Impact of Congenital Heart Defects," American Heart Association, https://www.heart.org/en/health-topics/congenital-heart-defects/the-impact-of-congenital-heart-defects

Who does it affect?

1.4MAdults are living with a congenital heart disease

Congenital Heart Disease and Disability

4 in 10Adults with congenital heart disease have a disability and may need support

Source: Centers for Disease Control and Prevention (CDC): Data and Statistics on Congenital Heart Defects 

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