Adult Congenital Heart Disease

Adult Congenital Heart Disease: Key Facts

Congenital heart defects are structural differences in the heart or major blood vessels that are present from birth.

Because of major advances in surgery, catheter procedures, and follow-up care, many people born with a heart defect reach adulthood and live full lives. Even when a defect was repaired in childhood, ongoing follow-up is sometimes needed to keep the heart healthy over time.

What does “congenital heart defect” mean?

A congenital heart defect may be simple (such as a small hole between heart chambers) or more complex.

Some defects close on their own. Others require monitoring, catheter-based treatment, or surgery.

A defect may involve heart valves, the wall (septum) between chambers, or large vessels such as the aorta.

“Repair” does not always mean “cure”

For some people, childhood repair resolves the issue completely.

For others, repair allows good daily function, but changes can still develop years later. Periodic follow-up helps detect treatable problems early—sometimes before symptoms appear.

Examples of common congenital heart defects:

Holes in the septum (between the atria or ventricles).
Valve problems (narrowing/stenosis or leakage/regurgitation).
Narrowing of the aorta (coarctation).
More complex defects that were treated in childhood with surgery and/or catheter procedures.

Why is follow-up in adulthood important?

Follow-up can help identify issues that may develop over time, such as:

Changes in heart function.
Valve narrowing or leakage.
Heart rhythm problems (fast/irregular heartbeat), and in some cases the need for a pacemaker.
The possible need for additional interventions in the future (not always, but sometimes).

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Common follow-up tests

Depending on your condition, follow-up may include:

ECG and sometimes Holter monitoring.
Echocardiography (ultrasound of the heart).
Sometimes an exercise stress test (with or without stress echocardiography).
In some cases, cardiac MRI or CT.

Warning signs — when should you get checked?

Seek medical evaluation if you develop new or worsening symptoms such as:

Chest pain/pressure (with exertion or at rest).
New shortness of breath or reduced exercise capacity.
Strong/rapid/irregular palpitations.
Dizziness, near-fainting, or fainting.
Leg swelling or rapid weight gain.
Bluish lips/fingers (cyanosis) or a drop in oxygen saturation (SpO₂).

Living with congenital heart disease

Many adults with congenital heart disease can and should stay active. The right type and intensity of exercise can vary by condition.

If you were born with a heart defect or had a repair in childhood, ask your specialist which activities are best for you and report any changes in symptoms.

Pregnancy and family planning

For some women with congenital heart disease, pregnancy is straightforward. For others, it can be higher risk, depending on the defect and heart function.

Planning ahead with an ACHD cardiology team and a high-risk obstetric team helps create a safe plan. Medication adjustments may be needed, and follow-up is important during pregnancy and after delivery.

Closing message

Adult congenital heart disease is more common than many people realize. Even if you feel well, appropriate follow-up and early attention to symptoms can make a big difference over time.

If you know (or suspect) you were born with a heart defect, consider discussing a personalized follow-up plan with your healthcare team.

Adult Congenital Heart Disease