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Profound Wonder Is the Way to Welcome Babies with Fatal Conditions

Wen Yan King
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Twenty reasons to think twice about aborting a baby with anencephaly.

A woman who is carrying twin girls with a fatal foetal abnormality has appealed to the Northern Ireland Minister for Health Edwin Poots to allow her have an abortion in Northern Ireland.

The woman, known as Laura, who is almost 22 weeks pregnant, said she was very recently informed that her babies have anencephaly and had no chance of survival. She is now arranging to travel to England for an abortion.

The case of another Northern Ireland woman, Sarah Ewart, who had an abortion last week in London for a baby with the same condition at 20 weeks has recently been highlighted by the BBC’s Stephen Nolan.

The 1967 British Abortion Act does not apply in Northern Ireland, where termination is permitted only where it is ‘necessary to preserve the life of the woman or there is a risk of real and serious adverse effect on her physical or mental health, which is either long-term or permanent’.

Currently only about 40 abortions are performed in Northern Ireland each year although 905 women from the province had abortions in England Wales in 2012.

A consultation is currently taking place about changing the guidelines on abortion and Minister of Justice David Ford has said that there is a need to widen it ‘to look at difficult issues like foetal abnormality to see if where the law is currently drawn is in the right place’ (see also here).

Anencephaly is a severe form of spina bifida where a failure of fusion of the neural tube in early pregnancy results in the baby developing without cerebral hemispheres, including the neocortex, which is responsible for cognition. The remaining brain tissue is often exposed, ie, not covered by bone or skin (see diagram above).

Those babies who survive to birth almost all die in the first hours or days after birth. There is no curative treatment available, only symptom relief.

Anencephaly is not uncommon, occurring in 1 out of 1,000 pregnancies, but only 3 out of 10,000 live births. Over 95 percent of parents opt for abortion in countries where this is legal and 208 babies with the condition were aborted in England and Wales in 2012.

One cannot hear these tragic testimonies without being deeply moved by the emotions expressed. There are few things worse than losing a child and it is a huge thing for a mother to carry a baby to term, knowing that it will be born with a terrible deformity and die shortly afterwards.

It is perhaps not surprising therefore that the media coverage of these recent cases, along with the public reaction, has been overwhelmingly supportive of the decision to abort and that there is now growing pressure for a change in the law.

Very few people, even doctors or disabled people’s advocates, are willing to express a contrary opinion, and I do so only because I believe that the issue is so important that the arguments for the contrary position need to be heard.

Before I qualified as a doctor I probably would have taken the generally expressed view, but an experience I had as a junior doctor dramatically changed my attitudes both to disability and abortion.

More on that later, but first, at the risk of being accused of trying to defend the ‘indefensible’, let me give twenty reasons why I believe parents (and doctors) should think twice about aborting a baby with anencephaly, and why I believe we as a society should be advocating an alternative approach. I would stress that this is my sincerely held personal view.

1. A baby with anencephaly is a human being. Our humanity is not diminished or degraded by sickness, disability, fragility, intellectual impairment or by what people think of us or how they value us. Babies with severe conditions like anencephaly are human beings worthy, like all human beings, of profound wonder, empathy, respect and protection.

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