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.
This Christmas, the British Heart Foundation will be running a media campaign to raise awareness of how congenital heart disease affects children and their families across the UK. As part of this, we’re asking parents about their experiences and the challenges they face.
If you’re the parent of a child with congenital heart disease, we’d be grateful if you could spare a few minutes to complete our anonymous survey
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.
Support for your family
Finding out that your child has a congenital heart condition can be very distressing, but support is out there.
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
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.
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.
Different types of congenital heart disease
Our understanding your child's heart booklets provide detailed information on different heart conditions in a way that’s easy to understand. They discuss symptoms and treatments, and where to go for more support. They can be downloaded or ordered free of charge:
More information for families
Join the fight against 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 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.