Adult Congenital Heart Disease

Who might have adult congenital heart disease?

People of all sexes, ages and races can have adult congenital heart disease. Women have a higher incidence of some conditions including atrial septal defect, mitral valve prolapse and patent ductus arteriosus. Men have a higher incidence of other conditions including aortic coarctation, tetralogy of Fallot and transposition of the great arteries. Some congenital heart defects are more common in people with genetic syndromes, like Down syndrome or Turner syndrome.

How common is adult congenital heart disease?

About 1.4 million adults in the U.S. have congenital heart disease. The number of people with ACHD continues to increase by about 5% each year.

What causes adult congenital heart disease?

Researchers aren’t sure exactly what causes adult congenital heart disease. Some ACHD may get passed down through families (inherited). In many cases, ACHD appears in conjunction with genetic diseases or disorders, such as Down syndrome and Turner syndrome.

You may also have a higher risk of ACHD if your birthing parent:

Had rubella or influenza (flu) during the first three months of pregnancy.

Had Type 1 diabetes or Type 2 diabetes.

Took certain medications for acne, bipolar disorder or seizures.

Took ibuprofen when 30 weeks or more pregnant.

What are the symptoms of adult congenital heart disease?

The signs and symptoms of ACHD vary depending on:

Age.

Number of heart defects.

Severity of the heart disease.

Type of ACHD.

Some people with ACHD don’t have any symptoms. If you do have symptoms, they may include:

Bluish fingernails, lips and skin (cyanosis).

Dizziness.

Fatigue, including getting tired quickly with activity.

Heart murmur.

Heart palpitations.

Irregular heart rhythms (arrhythmia).

Shortness of breath (dyspnea).

Swelling (edema) of the ankles, feet or hands.

How is adult congenital heart disease diagnosed?

Your healthcare provider will first ask about your symptoms and medical history. They will do a physical exam and listen to your heart with a stethoscope.

Your provider will use tests such as:

Cardiac catheterization, which can also be a treatment.

Chest X-ray.

Echocardiogram (echo).

Electrocardiogram (EKG).

Exercise stress test.

Heart MRI and heart CT scan.

Pulse oximetry.

Transesophageal echocardiogram (TEE).

How is adult congenital heart disease treated?

Some minor congenital heart defects may not need treatment. But you will still need regular heart checkups to make sure your condition isn’t getting worse.

ACHD treatment depends on the type and severity of the condition and may include:

Medications: Certain drugs can help your heart work better, including:

ACE inhibitors and calcium channel blockers.

Anticoagulants.

Beta-blockers.

Water pills (diuretics).

Implantable heart devices: Your provider may implant a device to control your heart rate (pacemaker) or fix an irregular heartbeat (implantable cardioverter defibrillator or ICD).

Cardiac catheterization: During cardiac catheterization, your provider inserts a thin tube (catheter) through a blood vessel in your groin. They guide the catheter to your heart. This procedure can help repair atrial septal defects. Your provider may also use a catheter with a tiny balloon to widen arteries (angioplasty) or valves (valvotomy).

Surgery: Your surgeon may perform heart valve surgery to repair or replace one or more of your heart valves. This can be open-heart surgery or minimally invasive heart surgery. Your surgeon can also fix more complex congenital heart defects through heart surgery.

Heart transplant: People with life-threatening congenital heart disease may need a complete heart transplant.