Congenital heart disease

Woman and childCongenital 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.

Get support for you and your child

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

For many babies diagnosed with congenital heart disease, their condition is a minor problem which either doesn’t need any treatment, or can be successfully corrected with surgery. Other conditions are more serious and sadly, some children do not survive. However, thanks to advances in early diagnosis and treatment, most children will grow up to become adults and lead full and active lives.

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.

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

  • Baby scanYou 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.
Lola's story
One family share how they coped with their baby's diagnosis.

What treatment is available?

Treatment depends on the type and severity of the condition. Some children won't require any treatment, while others may need medication or heart surgery. There are also other new techniques and procedures that, in some cases, can be done instead of surgery.

The different types of congenital heart disease

Understanding your child's heartOur series of booklets called understanding your child's heart provide detailed information on different heart conditions in a way that’s easy to understand.  They discuss the symptoms and treatments, and where to go for more support.  They can be downloaded or ordered free of charge.

Aortic stenosis
Atrial septal defect
Coarctation of the aorta
Common arterial trunk
Complete and partial atrioventricular septal defect
Double inlet ventricle
Hypoplastic left heart
Large ventricular septal defect
Patent ductus arteriosus
Pulmonary atresia with intact ventricular septum
Pulmonary atresia with ventricular septal defect
Pulmonary stenosis
Single ventricle circulation
Supraventricular tachycardia
Tetralogy of Fallot
Transposition of the great arteries
Tricuspid atresia

Is your child growing up with heart disease?

Meet@teenheart is a great place for 13-19 year olds with congenital heart disease to meet people just like them.

More help for parents

Children with congenital heart disease

A DVD for new and expectant parents, to help you understand what to expect

Operation fix-it

A story book designed to prepare children for a hospital visit

Children's heart hospitals

A list of hospitals in the UK with specialist children's heart centres

Caring for children on anticoagulants

Practical information for parents, teachers and carers

Physical activity - What if my child has a congenital heart condition?

Advice for parents and carers of children & young people with a congenital heart condition

Endocarditis information sheet

Information about endocarditis, a rare but serious infection that people with congenital heart disease are more prone to.

Join the fight against congenital heart disease

Mark and GretelIn the 1950s around eight out of ten babies with a complex congenital heart condition died before their first birthday. Today, thanks to advances in treatment and care, more than eight out of ten babies with congenital heart disease grow up to be adults. 

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.

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