Congenital heart disease

Mark and Gretel

Congenital heart disease means a heart condition or defect that develops in the womb, before a baby is born.

There are many different types of congenital heart disease. For example, a baby’s heart valves may not be properly formed or there may be holes between the chambers of their heart.

What causes congenital heart disease?

In most cases, something has gone wrong in the early development of the foetus. Some heart conditions are due to faulty genes or chromosomes. But often we don’t understand why the baby’s heart hasn’t developed normally.

If there's a family history of congenital heart disease, the mother has diabetes during pregnancy, or the mother has taken certain medications while pregnant (anticoagulants or antiepileptics) a baby may be at slightly higher risk of congenital heart disease.

How is congenital heart disease detected?

Some congenital heart problems are now picked up when the mother has an ultrasound scan during pregnancy (usually at the 20-week scan), but sometimes they are not found until after the baby has been born. Some conditions may not be discovered until the child is older or even an adult.

In babies and toddlers, congenital heart disease can have a range of symptoms because every child and condition is different. More common symptoms include extreme tiredness, poor feeding, excessive sweating, rapid heartbeat, breathing problems, chest pain and a blue tinge to the skin. If you notice any of these symptoms in your child, you should seek medical attention.

Ultrasound scan

If a congenital heart condition is suspected after your 20-week pregnancy scan

You may be asked to attend another scan with a specialist or referred to a fetal medicine unit, obstetrician or a specialist in cardiac or child medicine.

If a congenital heart condition is confirmed, you should be given a detailed description of the problem, information about any surgery that might be needed, and the overall long-term outlook.

If appropriate, specialist monitoring and care will be provided before, during and after the birth so that your baby can receive tests and treatment as soon as possible.  Some heart conditions can now also be treated in-utero (in the womb) before the birth.

If a congenital heart condition is suspected in a baby or child

Your child may undergo a physical examination and heart tests such as an ECG.

If the diagnosis is confirmed, they will be seen by a paediatric cardiologist, who will manage their care. You should be given a detailed description of the problem, information about any surgery that might be needed, and the overall long-term outlook for your child.

Support for your family

Finding out that your child has a congenital heart condition can be very distressing, but support is out there.

What treatment is available?

The treatments for congenital heart conditions depend on the type and severity of the condition. For many babies diagnosed with congenital heart disease, their condition is a minor problem which doesn't need any treatment. Others may need to have some form of treatment, usually either medication or heart surgery. There are also other new techniques and procedures that, in some cases, can be done instead of surgery.

Types of congenital heart disease

There are many different types of congenital heart defects. Our Understanding your child’s heart series of booklets provides detailed information about 16 different congenital heart conditions, in a way that’s easy to understand. The booklets cover symptoms and treatments, and where to go for more support. 
They can be downloaded or ordered free of charge by following these links:

More information for families

Help us beat heartbreak from congenital heart disease

Before the BHF existed, the majority of babies born in the UK with a heart defect did not survive to their first birthday. Today, thanks to our research, around eight out of ten survive to adulthood. 

Your money helps us fund hundreds of top scientists all over the UK, including the work of BHF Professor Shoumo Bhattacharya, whose team is investigating the genetics behind why some babies are born with heart problems, with the ultimate aim of preventing them altogether.

With your help, our researchers will find the breakthroughs that beat the heartbreak caused by congenital heart disease.

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