Congenital Heart Disease
Informed by recognized medical guidance
Overview
Congenital heart disease is a range of heart problems that are present from birth. It happens when the heart or the blood vessels near the heart do not develop normally before birth. This can cause blood to flow in the wrong direction or block it from flowing properly. There are many types, from tiny problems that need no treatment to major ones that require surgery.
Key facts
- Congenital heart disease is the most common birth defect, affecting around 1 in 100 newborns.
- The condition ranges from very mild to life-threatening, depending on the type of defect.
- With modern care, most children born with congenital heart disease can grow up and live active lives.
- Many people with congenital heart disease need lifelong follow-up with a heart specialist.
Yes. About 1 in every 100 babies is born with some form of congenital heart disease. In the UK, that is around 4,000 babies each year.
It can affect anyone, regardless of family history or lifestyle. Both boys and girls are born with it. Some children also have other health conditions, such as Down's syndrome.
Symptoms
- Blue or grey lips, tongue, or skin (cyanosis)
- Sudden severe breathlessness or struggling to breathe
- Fainting or passing out without an obvious reason
- Chest pain that lasts for more than a few minutes
- Sudden weakness or a drooped face (possible stroke)
- ⚠A new or changing heart murmur
- ⚠Rapid heartbeat that stays fast or feels irregular
- ⚠Unexplained fever with a known heart condition (as an urgent check for infection)
- ⚠Severe or unusual tiredness that stops you doing daily activities
- ⚠Losing weight without trying
Common symptoms
- A heart murmur (an unusual whooshing sound your doctor may hear)
- Shortness of breath
- Easy tiring during exercise or activity
- Swelling in the legs, ankles, or tummy
- A bluish tint to the skin, lips, or nails
Symptoms in children
- Poor feeding or slow weight gain in babies
- Breathing faster than usual, especially during feeding
- Tiring easily during play or sports
- Cold hands and feet
- Being very sleepy or less alert than expected
Symptoms in older adults
- Irregular heartbeat
- Dizziness or fainting
- Breathlessness during everyday activities
- Chest pain (less common)
- Swelling in the legs or tummy
Causes
Main causes
- The exact cause is often unknown.
- Changes (mutations) in genes can sometimes affect heart development.
- Infections during pregnancy, such as rubella, can raise the risk.
- Taking certain medicines during pregnancy may contribute.
Risk factors
- Having a parent or sibling with congenital heart disease
- A chromosome condition such as Down's syndrome in the child
- Maternal diabetes that is poorly controlled during pregnancy
- Mother's use of alcohol, certain street drugs, or some medications during pregnancy
When to see a doctor
See a doctor urgently if:
- If you or your child has any of the emergency symptoms listed above, call your local emergency number straight away.
- If your child has a blue tongue or lips, is breathing very fast, or is too sleepy to wake, get urgent help.
Book a routine appointment if:
- If you or your child has a heart murmur or other symptoms that worry you, make an appointment with your GP or health worker.
- If you have congenital heart disease and notice new symptoms like breathlessness, palpitations, or swelling, see your heart specialist or GP.
Diagnosis
Congenital heart disease can be found before a baby is born during a pregnancy ultrasound scan. After birth, it may be spotted when a doctor hears a heart murmur or sees a baby with blue skin. In adults, it is sometimes found during a routine check for another reason.
Tests that may be done
- Echocardiogram (an ultrasound scan of the heart)
- Electrocardiogram (ECG, a test that records the heart's electrical rhythm)
- Chest X-ray
- Blood oxygen measurement (pulse oximetry)
- Cardiac MRI (a detailed scan of the heart structures)
What to expect at your appointment
If your doctor suspects a heart problem, they will refer you or your child to a heart specialist (cardiologist). The specialist will ask about symptoms, listen to the heart, and arrange any needed tests. These tests are usually painless. You may need to wait a little while for the results, and the specialist will explain them to you in plain language.
Treatment
Treatment for congenital heart disease depends on the type of defect and how much it affects you or your child. Some defects need no treatment and close themselves over time. Others may need medication, a catheter procedure, or surgery to repair the heart.
Self-care at home
- Keep all follow-up appointments with your heart specialist.
- Learn the specific symptoms to watch for with your type of heart problem.
- Maintain a healthy lifestyle with a balanced diet and physical activity that your doctor approves.
- Take good care of your teeth and gums to reduce the risk of heart infection.
Medical treatments
Medicines are sometimes used to help the heart pump better, control heart rhythm, lower blood pressure, or reduce fluid build-up. Your doctor will explain the exact medicines and doses that are right for you or your child. Some people may also need a small device to help the heart beat more regularly.
When is surgery considered?
Surgery may be needed to repair or replace heart valves, close holes, or reline blood vessels. In more complex cases, multiple procedures over the years may be needed. Surgery is usually planned, not an emergency, and your team will talk you through the benefits and risks.
Living with this condition
Living with congenital heart disease often means paying attention to your body and going to regular check-ups. Many people feel completely healthy, while others may need to pace themselves. Your specialist will give you personal advice on activities and exercise.
Lifestyle tips
- If you smoke or vape, get support to stop – your pharmacist or clinic can help.
- Avoid recreational drugs, as they can stress the heart.
- If you drink alcohol, keep to the recommended limits.
- Ask your specialist before taking any new medicine or supplement – they can affect your heart condition.
Diet and exercise
Most people with congenital heart disease can enjoy regular exercise. A heart specialist can tell you what is safe for you. In general, eat a heart-healthy diet with plenty of fruit, vegetables, and whole grains, and limit very salty foods. If you have a specific restriction, your care team will tell you.
Mental health and emotional wellbeing
Living with a lifelong heart condition can be stressful and sometimes worrying. It is normal to feel anxious about symptoms, procedures, or the future. Talk to your care team and family about these feelings. If the worry affects your daily life, ask your GP or specialist for mental health support.
Prevention
Most congenital heart defects cannot be prevented. You can lower some risks by staying as healthy as possible before and during pregnancy. This includes taking folic acid, avoiding alcohol, not smoking, and controlling conditions like diabetes.
Vaccines
Keeping vaccinations up to date is important for everyone, especially people with heart conditions. Talk to your GP or pharmacist about which vaccines are right for you or your child.
Screening programmes
If you are pregnant, you will be offered ultrasound scans that can sometimes show heart defects before birth. If a baby is born with a heart problem, pulse oximetry screening can catch a problem early, and newborn examinations look for heart murmurs.
Complications
If left untreated
- Heart failure, when the heart cannot pump blood as well as it should
- Abnormal heart rhythms (arrhythmias)
- Infections inside the heart, called infective endocarditis
- High blood pressure in the lungs (pulmonary hypertension)
- An increased risk of stroke in some types of defect
Long-term outlook
The outlook for congenital heart disease has improved greatly over the past few decades. Many children become healthy adults, and most live long, active lives. Some will need ongoing care, but modern medicine and follow-up support help manage problems early. With the right treatment plan, hope and a good quality of life are absolutely realistic.
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Always verify with your doctor
Health guidelines vary by country and region. The information in this article is based on international clinical guidelines but may not reflect the specific guidelines, medications, or practices in your country. Always discuss your health concerns with your own doctor or healthcare provider, and refer to your local national health guidelines where available.
Important notice This information is for educational purposes only. It does not replace professional medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider about your specific situation. If you are experiencing a medical emergency, call your local emergency services immediately.
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Sources and guidance
This article is educational and is prepared with reference to recognized health information and clinical guidance sources where available. Specific source links may vary by topic.
Last updated: July 31, 2026
Educational note: This information is for education only and is not a diagnosis.
Use it to support, not replace, advice from a licensed clinician.
If symptoms are severe, worsening, or urgent, call your local emergency number or seek emergency care.