Anencephaly Awareness Month: May 2026
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Please note: This article contains mentions of baby loss, deaths in early childhood and parental grief.
Shine is here for anyone affected by conditions known as Neural Tube Defects (NTDs). This includes expectant parents and those who have lost a loved one with the conditions Shine supports with. This May, we’re shining a spotlight on anencephaly for Anencephaly Awareness Month 2026.
Anencephaly is the most severe NTD. It happens in about 1 in 2,000 pregnancies in the UK, and occurs when an unborn baby’s brain doesn’t form properly in the womb during the first 28 days of pregnancy. Unfortunately there is no treatment for anencephaly and sadly this condition is fatal.
Most babies diagnosed with this condition will be born prematurely, and will die before, during or very soon after birth. Some babies may live for a few minutes or even a few hours, and very rarely for a few days.
What Support Do Shine Offer Around Anencephaly?
Shine’s Website contains information to help people navigate some of the decisions that come with a diagnosis. This information has been written with the help of parents who have had a pregnancy affected by anencephaly and includes information that they wish had been available to them at the time of their baby’s diagnosis.
Shine’s Health Team can offer information and guidance through what a diagnosis means, as well as offering support around potential future pregnancies.
Shine’s Anencephaly Support Group is a closed Facebook group for anyone dealing with the loss of a child to anencephaly. It is a safe, non-judgemental place for asking questions and open discussions between people who have shared this experience, at any stage of the journey.
GriefChat is an online chat service, accessible through Shine’s website. Its counsellors are experienced in supporting bereaved people and helping to signpost to additional support. It is a completely free service, available Monday-Friday, 9am-9pm (excl. Bank Holidays).
Frequently Asked Questions About Anencephaly
What causes anencephaly?
Unfortunately, it isn’t currently possible to know exactly what might have happened in a particular pregnancy to lead to anencephaly.
How is anencephaly diagnosed?
It is possible to diagnose anencephaly by ultrasound scan at the dating scan (the ultrasound scan given at around 8 to 14 weeks of pregnancy).
Will a baby with anencephaly be in pain?
No. A baby born with anencephaly will have no awareness of anything that happens (although there may occasionally be some reflex responses). They will not feel pain as their brain has not developed.
What happens after diagnosis?
Following diagnosis, parents can choose to end their pregnancy early or to continue. There is no wrong choice of these two pathways. Those with a pregnancy affected by anencephaly should never feel rushed or pressured into making a decision.
Sadly, there is nothing that can be done to change the final outcome.
What is the likelihood of anencephaly happening again?
Once a person has a pregnancy affected by anencephaly, there is a 1 in 50 chance of it happening again. Genetics can play a role in this, and prospective parents who have previously had a pregnancy affected by anencephaly can ask to see a geneticist to find out more.
Is there anything that might reduce the chances of anencephaly happening again?
Shine’s Health Team are available to speak 1-2-1 with prospective parents to identify any changes that can be made which might help lower the chance of anencephaly happening again.
Folic acid supplementation is clinically proven to reduce the chances of a Neural Tube Defect (NTD) developing during pregnancy by up to 70%, which is why Shine have successfully campaigned for the mandatory fortification of flour with folic acid and encourage supplementation, beginning before becoming pregnant.
You can read more about Folic Acid, and other ways of lowering the chances of NTDs here.