- Top of page
- Dead donor rule
- Human death
- Anencephalic death
- Alder Hey and relevance
- The future
- Anencephaly is the most severe form of neural tube defect with most pregnancies terminated following antenatal diagnosis and those carrying to term often stillborn.
- Organ donation following anencephalic live birth has been undertaken worldwide, especially in the early years of infant transplantation. In the USA and Canada this ceased towards the end of the last century.
- Although few UK transplants occurred, and the practice has ceased, national guidelines still support organ retrieval from anencephalic babies once certified dead.
- With the current organ donation task-force linked drive, obstetricians are increasingly confronted with women carrying anencephalic fetuses who decline termination, perhaps for religious reasons, who would like to consider donation.
- Anencephalic donation does not occur in the UK, or indeed worldwide at present.
- This paper seeks to review the current UK position and possible developments, and to provide guidance for obstetricians to reply to such requests.
- Can a pregnant women elect for her anencephalic infant to be managed in such a manner – with organ support at delivery – that eventual donation after circulatory death can provide organs for others on the subsequent death of the baby?