Abstract

Anencephaly is a severe life-limiting condition that may be diagnosed from 12 weeks’ gestation, in which the baby develops without a major portion of their skull and brain and which results in the death of the baby either before delivery or shortly after birth. This study looked at a group of 26 continuing pregnancies where anencephaly was diagnosed in pregnancy–in a setting and at a time where legal termination of pregnancy was not available–and examined the course of the pregnancy, labour and birth in each case. One-fourth of pregnancies were complicated by increased amniotic fluid volume and in one-fifth of births there was difficulty with the baby’s shoulders being stuck (shoulder dystocia). A minority of women laboured spontaneously before term, but most requested their labour to be induced around term. The babies were most likely to die after birth, with 23% dying in the womb before birth and 35% died during labour. Infant survival ranged from 10 minutes to 8 days, and 6 parents went on to donate their infant’s organs for transplantation. This study provides useful information for health professionals caring for women with a diagnosis of anencephaly, and for those who choose to continue the pregnancy.