Congenital heart disease (CHD): information for parents
Updated 9 March 2020
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1. Overview
This information will be useful if your baby is suspected of having congenital heart disease (CHD) following your 20-week scan (sometimes referred to as the mid-pregnancy scan). It will help you and your health professionals to talk through the next stages of your and your baby’s care. This information should support, but not replace, discussions you have with health professionals.
Finding out there may be a problem with your baby’s development can be worrying. It is important to remember you are not alone.
We will refer you to a specialist team who will do their best to:
- provide more accurate information about your baby’s condition and treatment
- answer your questions
- help you plan the next steps
2. About congenital heart disease
To understand congenital heart disease (CHD), it can be useful to understand how a healthy heart works.
The heart is a muscle about the size of your fist. Its job is to send blood around the body. That blood provides the oxygen and nutrients the body needs. The right side of the heart pumps blood to the lungs where oxygen is added. The left side pumps blood from the lungs to the rest of the body.
The heart and blood vessels going into and out of the heart (image from Tiny Tickers)
CHD refers to different heart conditions that happen in the first few weeks after getting pregnant.
There are 3 main types of CHD. They are conditions that affect the:
- structure of the baby’s heart
- function of the heart
- rhythm of the heartbeat
Less serious conditions can include narrowed valves or a hole in the baby’s heart that allows blood to flow the wrong way and mix.
In more serious cases, known as ‘critical CHD’, parts of the baby’s heart can be missing or not formed very well. Up to a quarter of babies (25%) with CHD have critical CHD.
2.1 Causes
We do not know exactly what causes CHD. It is not caused by something you have or have not done. The condition usually occurs because something happens during the baby’s early development. It is sometimes linked to other medical conditions, like those affecting your baby’s chromosomes (genetic information). You will be able to discuss your individual circumstances with a specialist team.
CHD happens in about 8 babies out of every 1,000 (0.8%).
3. How we find congenital heart disease
We screen for CHD at the 20-week scan (between 18+0 to 20+6 weeks of pregnancy ). Sometimes we notice it during earlier or later scans in pregnancy. Not all heart conditions can be seen before the baby is born.
4. Follow-up tests and appointments
As the result of the scan suggests your baby has CHD, we are referring you to a team of experts in caring for pregnant mothers and their babies before they are born. They may be based at the hospital where you are currently receiving antenatal care, or in a different hospital. You will need a second scan to find out for sure if your baby has the condition. The specialist team will be able to confirm if your baby has CHD and what this might mean.
It may be useful to write down any questions you want to ask before you see the specialist team.
The specialist team may offer you extra tests, such as chorionic villus sampling (CVS) or amniocentesis.
If your baby has CHD, the specialist team will offer you extra ultrasound scans to monitor your baby. They may also offer you more detailed monitoring of your baby’s well-being before they are born. In some cases, the specialist team may recommend that your baby is born before their due date.
5. Treatment
The team looking after you and your baby will involve specialists such as fetal cardiologists (heart specialists), who will help care for your baby. They will talk to you about the condition, possible complications, treatment and how you can prepare for the birth of your baby.
Some babies with CHD will need an operation after they are born, others will not.
Babies with critical CHD will need specialised medical attention in a unit that is experienced in caring for babies with CHD. These babies will need an operation after they are born, usually before their first birthday.
The length of time your baby needs to spend in hospital depends on the baby and varies from weeks to months. This depends on things like the kind of operation your baby needs, the recovery time, if there are any complications or associated conditions, how your baby is feeding and whether they need any extra help with breathing. The specialist team will be able to give you more information depending on your individual circumstances.
6. Longer term health
CHD is wide and varied condition. It can be straightforward to treat, or complicated (and more serious) if there are other health issues as well. The possible outlook for you and your baby will depend on your individual circumstances. The specialist team will support you whatever the situation.
The specialist team looking after your baby will do their best to:
- answer your questions
- help you plan the next steps
7. Next steps and choices
You can talk to the team caring for you during your pregnancy about your baby’s CHD and your options. These will include continuing with your pregnancy or ending your pregnancy. You might want to learn more about CHD. It can be helpful to speak to a support organisation with experience of helping parents in this situation.
If you decide to continue with your pregnancy, the specialist team will help you:
- plan your care and the birth of your baby
- prepare to take your baby home
If you decide to end your pregnancy, you will be given information about what this involves and how you will be supported. You should be offered a choice of where and how to end your pregnancy and be given support that is individual to you and your family.
Only you know what the best decision for you and your family is. Whatever decision you make, your healthcare professionals will support you.
8. Future pregnancies
Future pregnancies are not likely to be affected by CHD.
9. More information
Antenatal Results and Choices (ARC) is a national charity that supports people making decisions about screening and diagnosis and whether or not to continue a pregnancy.
The British Heart Foundation (BHF) has simple information about heart and circulatory diseases, and their risk factors.
Children’s Heart Federation is a parent-led charity working with partner groups to make life better for children and young people with acquired or congenital heart disease in the UK.
NHS.UK has a complete guide to conditions, symptoms and treatments, including what to do and when to get help.
Tiny Tickers is a charitable organisation in Britain that aims to improve the early detection, diagnosis and care of babies with CHD through a combination of improving standards, providing specialised training and increasing education and information.
Find out how Public Health England (PHE) and the NHS use and protect your screening information.
Find out how to opt out of screening.
PHE created this leaflet on behalf of the NHS.