16891 Heart Disease Adult Congenital Heart Disease

Overview

Adult congenital heart disease (ACHD) is a term used when a person is living with a heart condition that they were born with, and they have now grown into adulthood. This includes a range of heart defects that were present at birth, such as a small hole in the heart, a leaky or narrowed valve, or more complex differences in how the heart is built. Even if the condition was treated during childhood — or never caused problems — adults with congenital heart disease need ongoing care and check-ups.

Congenital heart disease is one of the most common types of birth defect. Thanks to advances in surgery and medical care, more than 90% of babies born with a heart condition survive to adulthood. So the number of adults living with congenital heart disease is steadily growing.

It affects people of all ages who were born with a structural heart problem. Some find out during childhood, while others are diagnosed later in life — sometimes during a routine health check. Both men and women are affected, and many adult patients have had previous operations or procedures.

Symptoms

Common symptoms

• No symptoms at all — some people feel completely fine
• Getting out of breath easily during exercise or daily activities
• Fatigue or feeling unusually tired
• Palpitations or a feeling that your heart is racing, fluttering, or skipping beats
• Chest discomfort, pressure, or pain
• Swelling in the feet, ankles, or stomach
• Dizziness or light-headedness

Symptoms in children

• Many children with congenital heart disease have no obvious symptoms.
• Babies may show rapid breathing, poor feeding, or unusual tiredness during feeding.
• Older children may get tired more quickly during play or sport.
• Some children have blue or grey-tinted lips, fingers, or skin.
• Poor weight gain or slow growth can sometimes be a sign.

Symptoms in older adults

• Shortness of breath with mild effort or at rest
• Increasing fatigue or weakness
• Palpitations or irregular heart rhythms becoming more frequent
• Swelling in the feet or ankles that is new or worsening
• Chest pain or tightness
• Light-headedness or fainting episodes

Causes

Main causes

• The heart does not form completely normally in the early weeks of pregnancy.
• Genetic changes or inherited conditions may play a role.
• Some infections or illnesses during pregnancy can affect the baby’s heart development.
• Exposure to certain medicines or substances during pregnancy can sometimes increase the risk.
• In many cases, the exact cause is unknown.

Risk factors

• A family history of congenital heart disease
• Certain genetic disorders, such as Down syndrome
• Maternal conditions like poorly controlled diabetes during pregnancy
• Use of alcohol or certain medications during pregnancy
• Rubella (German measles) infection during pregnancy (now rare due to vaccination)

When to see a doctor

See a doctor urgently if:

• If you have chest pain, severe breathlessness, fainting, or blue lips, call your local emergency number immediately.
• If you have new or significantly worsening symptoms, contact your GP or cardiology team the same day.

Book a routine appointment if:

• If you know you have congenital heart disease and have missed a check-up, schedule one soon.
• If you have never been to an adult congenital heart disease clinic but were told you had a heart murmur or 'minor' heart defect as a child, ask your GP about a referral.
• If you are planning a pregnancy or are already pregnant, discuss your heart history with a specialist.

Diagnosis

Your doctor will start with a detailed history and a careful listen to your heart. If there is any suspicion of a heart condition, they will refer you to a heart specialist (a cardiologist). An adult congenital heart disease clinic is the ideal place to have expert assessment and coordinated follow-up.

Tests that may be done

• Echocardiogram — an ultrasound scan that shows the structure and movement of your heart.
• Electrocardiogram (ECG) — a simple test that records the electrical activity of your heart.
• Chest X-ray — to see the size and shape of your heart.
• Cardiac MRI — a detailed scan that gives very clear pictures of the heart.
• Exercise stress test — shows how your heart responds to physical activity.
• Blood tests — to check how your heart and other organs are working.

What to expect at your appointment

Most tests are painless and done as an outpatient. You might need to change into a hospital gown and lie still for the scans. Some scans take up to an hour. Your specialist will explain the results and what they mean for your everyday life, and they will usually give you a written summary of your heart condition to carry with you.

Treatment

Treatment for adult congenital heart disease depends on the specific defect, how it affects your heart function, and your overall health. Many people don't need any invasive treatment — they just need regular monitoring. Others may benefit from medicines to support heart function, control rhythm, or prevent infections. Some conditions require catheter-based procedures or surgery, often done in specialist centres.

Self-care at home

• Attend all follow-up appointments, even if you feel well.
• Know the names of your heart condition and any medications you take.
• Carry a summary of your heart history, or keep it accessible on your phone.
• Ask your cardiology team before starting a new exercise programme.
• Keep your teeth and gums healthy — this helps prevent infections that could affect the heart.
• Before any surgery or dental procedure, tell the healthcare team you have congenital heart disease.

Medical treatments

Medicines can help the heart pump more effectively, control rhythm problems, lower blood pressure, or reduce the risk of blood clots. The exact medicines depend on your individual condition. Some people may need antibiotics before certain dental or surgical procedures if their heart condition makes them more vulnerable to infection. Always discuss your treatment plan with your cardiologist.

When is surgery considered?

Surgery is sometimes recommended when a defect causes symptoms or puts strain on the heart or lungs. Advances in surgery have made many procedures safer, and some can now be done through small tubes (catheter procedures) without open surgery. If your specialist feels that surgery would help you, they will explain exactly what is involved and what you can expect during recovery.

Living with this condition

Living with adult congenital heart disease is different for everyone. Many people feel completely normal and only think about their heart during check-ups. For others, symptoms like tiredness or breathlessness may affect some activities. Your cardiology team will give you individual advice about activity, work, travel, and pregnancy. It is important to stay informed and feel confident in managing your health.

Lifestyle tips

• Stay as physically active as you can — most people with congenital heart disease can exercise safely.
• Avoid smoking and inhaling second-hand smoke.
• Limit alcohol to within recommended guidelines, and ask your doctor about safe limits for you.
• Keep up to date with flu and COVID-19 vaccinations as advised by your doctor.
• Tell your healthcare team about any new symptoms rather than waiting for them to pass.

Diet and exercise

A heart-healthy diet and regular exercise are good for everyone, including adults born with heart defects. Eating plenty of fruit, vegetables, wholegrains, and lean proteins, and reducing salty and highly processed foods, can support your heart. In terms of exercise, many people can enjoy walking, cycling, swimming, or team sports. However, some conditions may have specific restrictions, so always get personal advice from your specialist before starting heavy weightlifting or intense competitive sports.

Mental health and emotional wellbeing

Living with a long-term heart condition can sometimes bring anxiety, low mood, or feelings of being 'different'. It's completely normal to have these emotions. Remember, support is available. Talking to your clinical team, friends, or family can help. Some people also find that seeing a counsellor or psychologist who understands chronic illness makes a real difference.

Prevention

You cannot prevent being born with a heart defect — it happens early in pregnancy. However, you can take steps to prevent complications from an existing condition. This includes regular check-ups, healthy lifestyle habits, protecting your teeth, keeping well-hydrated during illness, and seeking early advice if symptoms change.

Vaccines

Keeping your vaccinations up to date is important because infections like flu or COVID-19 can be harder for some people with heart conditions. Your cardiology team or primary care provider can tell you which vaccines are recommended for you.

Screening programmes

Screening for complications is an important part of routine adult congenital heart disease care. This means having scheduled tests, even if you feel well. Screening checks like heart scans and blood tests are used to spot problems early, so they can be treated before they become serious.

Complications

If left untreated

• Heart failure — where the heart cannot pump blood strongly enough.
• Arrhythmias — heart rhythm problems that may cause palpitations or dizziness.
• Pulmonary hypertension — high blood pressure in the lungs.
• Infective endocarditis — an infection of the inner lining of the heart or valves.
• Blood clots — which can lead to stroke or other damage.
• Poor oxygen levels in the blood, which can affect energy and organ function.

Long-term outlook

The outlook for adults with congenital heart disease is better than ever. Thanks to specialist care, modern treatments, and a good support team, most people lead long, healthy, and active lives. Regular follow-up is the single best way to protect your heart for the future — and the earlier any issue is caught, the easier it is to manage.

Find support

International organisations

• Adult Congenital Heart Association (ACHA) ↗
• British Heart Foundation ↗

Local organisations

• Your regional adult congenital heart disease service or clinic · Check with your cardiology team for your local provider

Helplines

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