The trauma of a diagnosis of a life-limiting condition is compounded by the difficulty of making ethical and legal decisions about a baby's future. George Winter examines the case of anencephaly
Anencephaly is an untreatable and terminal neural tube defect in which most of a fetus' brain, skull and scalp is missing. It affects approximately 1 in 1000 pregnancies globally (Cook et al, 2008) and although stillbirth is common, some affected babies can be born alive (Obeidi et al, 2010), which, among other issues, can lead to moral, ethical and legal debates regarding termination of pregnancy. Cook et al (2008: 307) note ethical concerns over late-term abortions, but detect ‘little controversy, where medicine is practiced according to professional secular principles, about late termination of anencephalic pregnancy.’
But how should health professionals engage with parents whose governments or religious beliefs forbid termination of pregnancy? Obeidi et al (2010) undertook their work in Ireland when termination of pregnancy was still illegal, and so participants received the recommended prenatal care from health professionals in preparation for birth. The authors also cited evidence, based on the experiences of couples elsewhere who chose to continue with pregnancy, that health professionals were unprepared to provide appropriate care for babies with anencephaly. Obeidi et al (2010) further identified a dilemma related to the timing of the induction of labour in mothers whose babies were viable: some authorities deem the early induction of labour of anencephalic fetuses acceptable, while others judge early induction as a form of termination, as the baby is often unable to survive for long outside the womb.
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