What is Anencephaly

This information has been written with the help of parents who have had a pregnancy affected by anencephaly. It includes information that they wish had been available to them at the time of their baby’s diagnosis.

What is anencephaly?

Anencephaly is the most severe of a group of conditions known as Neural Tube Defects (NTDs). 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. All this happens during the first 28 days of pregnancy. Sadly this condition is fatal. Most babies that are 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.

How is it diagnosed, and is there any treatment?

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). 

Unfortunately there is no treatment for anencephaly.

Will my baby be in pain?

No. Because your baby’s brain doesn’t develop, there will be no awareness of anything that happens, although there may occasionally be some reflex responses.

Where can I go for more information and support?

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. Read more about how we can support you here.