Anencephaly

Anencephaly occurs when the baby's brain doesn't form as it should in early pregnancy. It is the most severe form of Neural Tube Defect (NTD), and sadly it is always fatal.

Shine is here to help - on these pages you can find more information about the condition, what happens after diagnosis, and support we can offer you.

About Anencephaly

What is Anencephaly?
Learn about the condition, what causes it, diagnosis, and more.
Find out more
What happens after diagnosis?
Coming to terms with a diagnosis, and deciding on your next steps.
Find out more
Will it happen again?
The likelihood of having another anencephaly pregnancy, and steps you can take.
Find out more

Support when you need it

Around 1 in 2,000 anencephaly pregnancies are diagnosed in the UK each year, and parents must navigate complex decisions while experiencing overwhelming emotions. Processing such a profound loss takes time and needs support. Everyone’s grief journey is different but Shine are here for you in the days, weeks, months, or years following an anencephaly diagnosis.

At the moment you may feel like talking only to your family and friends, or a particular professional or faith leader. You may also feel as though you can’t talk to anyone at all. It’s important to know that you are not alone, and that there are other people and organisations that can provide information and support throughout your pregnancy, loss, and afterwards.

Join our Anencephaly Support Group

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 where you can ask questions and openly discuss your feelings with others who share your experience, at any stage of your journey.

This group is managed by Shine’s Health Team, with the help of volunteers who have first hand experience of a pregnancy affected by anencephaly.

Join the group

Preparing for a next pregnancy

Our health team also provide support and important advice on getting ready for a next pregnancy, to help reduce the chances of it happening again.

GriefChat

Chat online directly to a specially trained bereavement counsellor with GriefChat. Created by bereavement experts, GriefChat counsellors are experienced in supporting bereaved people and will listen to your story, explore how your grief is affecting you, and help you to find any additional support you might need.

Find out more