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Congenital heart disease

Congenital heart disease is when you are born with a heart defect, like a hole in your heart. This can affect the way blood flows around your body. Treatments include medicine and sometimes surgery.

Symptoms of congenital heart disease

Symptoms of congenital heart disease may be present from birth and in childhood, such as:

  • difficulty in feeding
  • being slow in putting on weight and growing
  • swelling around the tummy and swollen hands, ankles and feet

Sometimes symptoms do not appear until you're a teenager or adult.

Common symptoms of congenital heart disease include:

  • feeling tired all the time
  • shortness of breath
  • being sweatier than usual, but skin feels cool and clammy
  • heart palpitations - when your heartbeat feels uncomfortable or unusual
  • areas of the skin and lips turning blue or grey (cyanosis) - this may be easier to see on black or brown skin by checking the palms of the hand, soles of the feet, lips, gums and inside the eyelid

It’s common to have a heart murmur, where your heartbeat has an unusual sound. This is something a doctor can diagnose using a stethoscope.

Immediate action required: Call 999 if:

  • you or your child's lips, tongue, face or skin suddenly turn blue or grey - on brown or black skin, this may be easier to see on the palms of the hands, soles of the feet, lips, gums and inside the eyelids

You or your child may also:

  • have difficulty breathing
  • have chest pain
  • be confused, drowsy or dizzy
  • have heart rhythm problems, like the heart beating too quickly, or without a steady beat

Your child may also be limp, floppy or not responding like they normally do. Their head may fall to the side, backwards or forwards, or they may find it difficult to lift their head or focus on your face.

These are signs of a serious medical problem.

Information:

Do not drive yourself to A&E.

The person you speak to at 999 will give you advice about what to do.

Urgent advice: Ask for an urgent GP appointment or get help from NHS 111 if:

  • you think you or your child may have symptoms of congenital heart disease

You can call 111 or get help from 111 online. Call 111 if you need advice for a child under 5 years old.

Diagnosing congenital heart disease

Congenital heart disease is screened for during the 20-week pregnancy screening scan. The 20-week scan cannot find all conditions, so it’s possible for congenital heart disease to be missed.

Sometimes it is not diagnosed until you’re an adult.

Tests for congenital heart disease in children and adults include:

  • measuring how much oxygen is in your blood (pulse oximetry test)
  • measuring the electrical activity of the heart (electrocardiogram)
  • chest X-rays
  • scans to check your heart and the surrounding blood vessels, such as an MRI and echocardiogram
  • blood tests to check for genetic alterations (mutated genes) that may cause heart problems
  • studying the flow of blood through your heart using a special dye that shows up on scanners (cardiac catheterisation and coronary angiography)

Types of congenital heart disease

There are many different types of congenital heart disease and how it is treated will vary depending on the type.

Some types can have an immediate effect on the body and need surgery soon after birth.

Other types, such as a hole in the heart can often be left untreated.

Information:

Find out more

Treatment for congenital heart disease

If you or your child are diagnosed with congenital heart disease, you’ll be referred to a specialist team at an NHS hospital.

You or your child may only need regular check-ups after diagnosis and treatment may only be needed if symptoms get worse.

Medicines

If you have congenital heart disease, you may need to take medicine:

  • to strengthen your heart beat and increase the oxygen in your blood (digoxin)
  • to reduce fluid build-up in your body (diuretics)
  • to help improve blood flow (ACE inhibitors)
  • to help control an irregular heartbeat (anti-arrhythmics)

Depending on your condition, you may need surgery as soon as you are born, or much later in your life.

Surgery for congenital heart disease includes:

  • keyhole surgery
  • open heart surgery

In rare cases, you may need to have a heart transplant or a heart and lungs transplant.

Information:

Find out more

Things you can do to help with congenital heart disease

If you have congenital heart disease, it’s important to keep your heart and lungs as healthy as possible.

Do

  • try to stick to a healthy weight

  • try to eat a healthy diet including fruit, vegetables, wholegrain foods such as wholemeal bread and oats, and pulses such as chickpeas and lentils

  • take care of your teeth and make sure you have regular dental check-ups; gum infections can cause complications if you have congenital heart disease

  • stay physically active - your care team can give advice about what is a safe level of activity for you

Don’t

  • do not smoke, vape or use illegal drugs

  • do not drink large amounts of alcohol as this can damage your heart and blood vessels

How congenital heart disease affects your life

Having congenital heart disease can affect your life in many different ways.

For some people, the condition may just mean having regular check-ups.

Other people may have symptoms that limit what they can do, such as not being as physically active as they would like.

If your condition is making you anxious or affecting your mental health, talk to your care team.

Congenital heart disease and pregnancy

If you have congenital heart disease and are pregnant, or trying to get pregnant, tell your care team.

They can offer advice on how to make your pregnancy as safe as possible and provide additional treatment as required.

Complications of congenital heart disease

Congenital heart disease can put strain on your heart and lungs, and you may get complications as you get older.

Complications can include:

Causes of congenital heart disease

Congenital heart disease develops while your heart is still being formed inside the womb.

Sometimes problems with your heart are caused by an altered gene being passed on from one of your parents. But often there is no clear reason why someone is born with congenital heart disease.

If you’re pregnant, you may be more likely to have a baby with congenital heart disease if:

Help and support for congenital heart disease

As well as support from your care team, you may find it helpful to get support from other people affected by congenital heart disease.

This could be from other parents and carers, or other adults living with the condition.

The British Heart Foundation is a national charity that offers support and information about congenital heart disease.

British Heart Foundation

Information and support for anyone affected by congenital heart disease.

Page last reviewed: 11 December 2025
Next review due: 11 December 2028