Anencephaly: information for parents
Updated 9 March 2020
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This publication is available at https://www.gov.uk/government/publications/anencephaly-description-in-brief/anencephaly-information-for-parents
1. Overview
This information will help you if your baby is suspected of having anencephaly (pronounced an-en-kef-aly) 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
- answer your questions
- help you plan the next steps
2. About anencephaly
Anencephaly is a life-limiting condition where the baby’s brain and spinal cord (the fetal nervous system) do not develop properly. This is a very serious condition where large parts of the baby’s skull and brain are missing. The baby’s face and neck may also be affected.
In the early stages of pregnancy, the nervous system of the developing baby starts as a single structure called the neural plate. By day 28 of pregnancy, the neural plate should fold over and close to form the neural tube. If the neural tube does not close completely it results in a neural tube defect (NTD) such as anencephaly.
2.1 Causes
We do not know exactly what causes anencephaly. It is not caused by something you have or have not done.
Anencephaly happens in about 5 babies out of every 10,000 (0.05%).
2.2 How we find anencephaly
We screen for anencephaly at the 20-week scan (between 18+0 to 20+6 weeks of pregnancy). Often we notice it during an earlier scan at around 12 weeks of pregnancy.
3. Follow-up tests and appointments
As a result of the scan suggests your baby has anencephaly, 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 anencephaly and what this might mean.
It may be useful to write down any questions you want to ask before you see the specialist team.
4. Outcome
There is no treatment for anencephaly. Sadly, most babies (up to 3 out of 4) with the condition are stillborn. Babies who survive throughout the pregnancy die shortly after birth. On rare occasions, babies may live for a few days.
5. Next steps and choices
You can talk to the team caring for you during your pregnancy about your baby’s anencephaly and your options. These will include continuing with your pregnancy or ending your pregnancy. You might want to learn more about anencephaly. 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. As there is sadly no cure for anencephaly, the team will discuss how you wish your baby to be cared for after birth. This is called palliative care. Palliative care is when health professionals help relieve symptoms and make people comfortable when no treatment or cure is available. In the case of anencephaly, your baby will be kept comfortable until he or she dies, usually within a few hours of birth.
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.
If you wish to build some memories of your baby, staff will offer you and your family help to do so.
Only you know what the best decision for you and your family is. Whatever decision you make, your healthcare professionals will support you.
6. Future pregnancies
Future pregnancies are not likely to be affected by the condition. However, if you have had a baby with anencephaly, there is a small chance, up to 2% (2 out of 100), of having another baby with the condition.
There is a possible link between anencephaly and low levels of folate (folic acid) in your blood. If planning future pregnancies, it is recommended that women who have had a previous pregnancy affected by anencephaly take a higher dose of folic acid (5 mg per day instead of the usual 0.4 mg per day) before getting pregnant and up until 12 weeks of pregnancy. You may also be referred to a genetic counsellor to discuss future pregnancies.
7. 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.
Shine is a national charity providing specialist advice about, and support for, anencephaly across England, Wales and Northern Ireland.
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.