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Congenital heart disease information

Congenital heart disease describes a problem with the heart's structure and function due to abnormal heart development before birth. Congenital means present at birth.

The normal heart

Diagram showing the different chambers of the heart

The heart is a pump consisting of four chambers. There are two upper collecting chambers and two bottom pumping chambers.

The left-hand side of the heart receives oxygenated blood from the lungs and then pumps this to the body for use.

The right-hand side of the heart collects the deoxygenated (used) blood from the body and then pumps this back around into the lungs for re-oxygenation.

There are one-way valves between the upper and lower chambers of the heart and at the beginning of the major arteries to the body and lungs.

There is usually a solid wall of tissue between the walls of the upper and lower chambers. The heart has its own electricity supply that causes it to contract and relax (squish) pumping blood rhythmically to the body.

What causes congenital heart disease?

The exact cause of congenital heart disease isn’t often not clear. Most heart problems in children are present from birth due to an anomaly in the way the heart forms during the very early stages of pregnancy.

The reasons for this may be due to a number of factors, such as genetics, environmental factors or infection.

Some medications taken during pregnancy (such as epilepsy drugs) or conditions such as diabetes have been shown to cause a small increase in the risk of having a baby with a cardiac problem.

Babies or children with a syndrome or proven chromosomal problem (such as Down Syndrome) often have a higher risk of having a coexisting heart problem. In Down Syndrome (Trisomy 21), for example, up to 60 per cent of children will also have some form of heart disease.

A smaller group of child heart problems are due to underlying muscle problems with the heart muscle itself. These may be due to an infection acquired in childhood or an electrical irregularity in the way the heart contracts as it pumps blood around the body.

It’s natural to feel guilty if your child is unwell. But the likelihood that a heart problem will have been caused directly by anything you have done during pregnancy or early life is very rare.

How is congenital heart disease diagnosed?

Congenital heart disease can be diagnosed before birth during your routine ultrasound examination between Weeks 18 and 20 of pregnancy.

However, some cases will not be picked up until after birth. Signs that your child may have a heart problem include cyanosis (blueness), breathlessness or poor weight gain in the first few months.

Doctors may also ask to carry out diagnostic tests (such as an ECG or a chest X-ray) if they have detected a heart murmur or you have a family history of heart problems.

Is congenital heart disease always awful news?

Hearing that your child has a heart problem is upsetting. However, it is important to remember that there is huge variation in how severe the problem may be and the impact it may have on your child’s health.

For example, a hole in the heart may be so tiny that, although it produces an extra heart sound (or murmur), it has no impact on your child’s day-to-day or long-term health. If the hole is larger, your child may need to be monitored via regular clinic appointments or, if they are struggling with feeds, we will look at whether they require surgery.

How is congenital heart disease treated?

Treatment depends on the type and severity of the condition, and an important aspect of our work is individualising the care we give to each child.

Some children will not require any treatment, while others may need medicines or interventional procedures involving cardiac catheterisation or child heart surgery.

If an operation is necessary, we will time the procedure to minimise the associated surgical risks. Sometimes waiting a few months for a child to grow and gain a little weight gain will make operating easier.

What happens next?

All children with congenital heart disease (even when corrected) will need regular check-ups, usually continuing into adulthood.

These will usually involve repeat Echo and ECG scans and sometimes cardiac magnetic resonance imaging (MRI) scans. The aim of these check-ups is to monitor your child’s heart function so that any future heart problems are diagnosed and treated quickly.

More information


You can learn more about our clinical specialties by visiting cardiology.

Contact one of the support organisations below:

British Heart Foundation
Tel (Heart Help Line): 0300 330 3311 (calls charged at local rate)
Website: www.bhf.org.uk

Heartline
Tel: 03300 224 466 (local rate number)
Website: www.heartline.org.uk

Last reviewed by Great Ormond Street Hospital: 28 March 2012