A Baby Named Louise: Medical Ethics, Informed Consent and the Value of Disabled Infant Lives in the Summer of 1978

Abstract The article examines how attitudes towards disability and infancy shaped informed consent and medical ethics in late 1970s Britain. It focuses on a baby who shared her year, month of birth, and forename – Louise - with the first baby conceived through in vitro fertilisation. This Louise, born with spina bifida myelomeningocele, died within a month of birth from infection, dehydration, and starvation. The article reveals how progress treating spina bifida was deliberately reversed in the 1970s, when some doctors and policymakers argued that it was better for babies to die, than survive with significant impairments. This shift occurred because disability was seen as a burden and babies as lacking personhood. The new principle of involving parents in decision-making left many burdened with guilt for decisions largely taken by doctors. A deliberately opaque government policy prevented doctors from being tried for manslaughter but left them exposed to public scrutiny and criminal investigation.