2. A baby with anencephaly is not brain dead. Babies with anencephaly, although not conscious, are not brain dead. Their brainstems are functioning at least in part which is why they can breathe without ventilators, often survive for several days and are not permitted to be used as organ donors.
3. A baby with anencephaly is a dependent relative. Babies with anencephaly are profoundly dependent but are also biologically related to their parents and carry their genes. They are therefore dependent relatives and so should, I believe, be treated with the same love and respect as any other dependent and dying close relative.
4. A baby with anencephaly is a disabled person. Babies with anencephaly are profoundly disabled and have special needs. They are also people because personhood is not contingent upon intellectual capacity or function but conferred on every member of the human race. They are therefore just profoundly disabled people who should be treated the same as disabled people at any other age. There are other causes of similar brain dysfunction including birth asphyxia, trauma, stroke and brain tumour.
5. Palliative care is the best response to terminal illness. Babies with anencephaly are human beings with a terminal condition. They are dying babies for whom no curative treatment is possible. The appropriate management in treating patients in this condition is palliative care – food, water, warmth, human company and symptom relief. Perinatal hospice is a wonderful concept that should be promoted much more widely.
6. We should not be making judgements about the worth of other people. None of us has the right to make value judgements about the worth of another human being; especially when that person is unable to express an opinion about the matter. Equally we do not have the right to end their lives regardless of what burden we perceive they impose on us.
7. Abortion for anencephaly is discriminatory. Anencephaly is usually diagnosed at the time of the 18 week anomaly scan so abortion is inevitably later than this. Most people however strongly oppose abortion beyond 20 weeks. The recent parliamentary inquiry into abortion for fetal disability (Bruce Inquiry) concluded that the current law on abortion for severe disability was discriminatory in two ways. First it allowed abortion up until 24 weeks for able-bodied babies but until birth (40 weeks) for disabled babies. Second it allowed abortion for babies with significant risk of a serious abnormality, but not for those with lesser degrees of special need.
8. Abortion for anencephaly is often a coercive offer. The Bruce Inquiry revealed that there was a strong presumption from doctors that parents with disabled babies would choose to have them aborted. This led to a huge amount of subtle or direct pressure being placed on parents who decided not to abort. They were repeatedly asked to reconsider their decisions and treated like pariahs – in short they were discriminated against. It is just this sort of pressure that has led some commentators like Melinda Tankard Reist to talk about abortion for disability as a ‘coercive offer’. Reist’s book Defiant Birth tells the personal stories of women who have resisted ‘medical eugenics’ and dared to challenge the utilitarian medical model and mindset.
9. Abortion for anencephaly is contrary to every historic ethical code. Historic codes of medical ethics such as the Hippocratic Oath and the Declaration of Geneva prohibit abortion. The latter states as one of its central tenets, ‘I will maintain the utmost respect for human life from the time of conception; even against threat I will not use my medical knowledge contrary to the laws of humanity’.