This leaflet is for pregnant women whose baby may have anencephaly. It can help women talk through the next stages of their care with health professionals.

Applies to England

Documents

Details

This publication explains the neural tube defect anencephaly, a condition screened for by an ultrasound scan as part of the NHS Fetal Anomaly Screening Programme.

The document includes information for parents whose baby has screened positively for anencephaly about:

  • what the condition is
  • how common it is
  • how it is diagnosed and confirmed
  • what treatment is available
  • what the outlook for the baby is
  • what happens next
  • how likely it is to happen in future pregnancy
  • where more support and information is available

To request another format, you can phone 0300 311 22 33 or email england.contactus@nhs.net.

Updates to this page

Published 1 April 2012
Last updated 69 MarchJuly 2026 href="#full-history">+ show Show all updates
  1. Added translations in 10 languages: Arabic, Bengali, Gujarati, Simplified Chinese, Polish, Portuguese, Spanish, Romanian, Punjabi and Urdu.

  2. Added information on requesting other formats.

  3. Changed lead organisation to NHS England. Removed references to PHE.

  4. Replaced PDF with an updated HTML attachment.

  5. Information leaflet reviewed and revised.

  6. First published.

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