Congenital heart disease

Symptoms of congenital heart disease include shortness of breath, tiredness and the skin and lips turning blue or grey.

Congenital heart disease is screened for during pregnancy. Children and adults can be diagnosed using scans or blood tests.

Congenital heart disease can be treated with medicine and surgery. Milder heart problems may not need treatment.

Complications of congenital heart disease include heart failure, heart infection (endocarditis), high blood pressure and stroke.

Congenital heart disease develops while a baby's heart is being formed inside the womb. Risk factors may include smoking when pregnant.

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.

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 (angiography)

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.

Find out more

• Understanding your congenital heart condition (British Heart Foundation)
• Congenital heart disease (CHD): information for parents (GOV.UK)

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.

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.

Find out more

• Medicines for heart conditions (British Heart Foundation)
• Heart surgery (British Heart Foundation)

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

• 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

• do not smoke, vape or use illegal drugs

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

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

Complications can include:

• heart failure – where your heart is unable to pump blood around your body properly
• endocarditis – a rare type of heart infection
• pulmonary hypertension – high blood pressure in the blood vessels that supply your lungs
• stroke

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:

• you’re living with obesity
• you smoke, or are exposed to second-hand smoke
• you have gestational diabetes
• you get an infection such as rubella

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.

• Website: https://www.bhf.org.uk/
• BHF: ways to get support