Anencephaly is a neural tube defect (a condition where the brain or spinal cord of an embryo does not develop properly). It happens when the bones of the skull do not form properly. This results in severe damage to the baby’s brain when it is developing. Anencephaly happens during the first 24 days after the egg is fertilised by the sperm. The exact cause of anencephaly is not known although genetic and environmental (for example, dietary) factors are involved. Currently in the UK Anencephaly occurs in about 6 of every 10,000 births.
Anencephaly may be noticed at the dating scan if that scan is carried out after 11 weeks of pregnancy. However, it is usually identified at the Fetal Anomaly ultrasound scan carried out between 18 weeks and 21 weeks of pregnancy.
Unfortunately, there is no cure for Anencephaly and sadly most babies with anencephaly die before they are born or shortly after birth. It is rare for babies to live for a few days however it has been known for children to survive for longer.