Profound wonder is the way to welcome babies with fatal conditions

Peter Saunders
29 October 2013
Reproduced with Permission
MercatorNet

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 rube 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.
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 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'.
10. Abortion for anencephaly exchanges one problem for a whole set of different problems. Abortion may appear to offer a solution but the mother is still left to deal with the guilt, emotional trauma and unresolved grief of loss of what is almost always a wanted baby. These inward scars may take a lifetime to heal.
11. Saying goodbye properly is important for resolving grief and achieving closure. Achieving effective closure after the loss of a baby is best achieved if parents are able to spend time with their dying, or dead, baby, saying what they would have wanted to say and treasuring the precious moments. Covering the baby's head with a woollen cap may enable them to focus on the eyes and face which are usually normal to look at (see the story of Rachel). 'Saying Goodbye' is a charity which is running very welcome thanksgiving services for couples who have lost babies before or after birth.
12. Abortion for anencephaly can be profoundly damaging to a mother's mental health. Mothers who abort babies for fetal abnormality are highly susceptible to mental health problems afterwards. This is because the abortions are late, the babies were generally 'wanted', an emotional bond with the baby has usually been established and there has been no opportunity properly to say goodbye. There is a better way than abortion.
13. Pregnancy is the most intimate form of hospitality. A mother's womb offers protection, warmth, shelter, food and water within the body of one's closest relative. There is no form of hospitality that is more intimate or more suited to one whose life is going to be very short.
14. There are real dangers of incremental extension once we embark down this route. The British Abortion Act 1967 was driven through on the back of the thalidomide disaster and was meant to authorise abortion only in severe circumstances. Now there are 200,000 abortions a year with one in five pregnancies ending in this way. Babies have been aborted for cleft palate and club feet. Recent statistics showed that between 2002 and 2010 there were 17,983 abortions of disabled babies in Britain. The overwhelming majority of these were for conditions compatible with life outside the womb and 1,189 babies were aborted after 24 weeks, the accepted age of viability.
15. Deformity does not define us. Our worth as human beings is independent of any disabilities we might have.
16. Easing our own pain is not sufficient reason for ending another person's life. Given that babies with anencephaly do not feel pain, the question has to be asked whose pain their deaths are actually relieving. Any interventions should primarily be aimed at benefiting the babies themselves.
17. Anencephaly forces us to acknowledge and face our deepest prejudices. In a society that values physical beauty, athletic prowess and intellectual capacity highly it is easy to see why babies with anencephaly are low down the pecking order. They fall foul of our deep societal prejudice toward people who are 'ugly to look at', 'unintelligent' and 'physically inept'. The only effective way of overcoming such prejudices is to cultivate attitudes of compassion and care for people with severe disabilities. Caring collectively for those who are suffering, disabled and dying makes our society less selfish.
18. Major life decisions should not be made at a time of crisis. Major life decisions, like choosing to abort one's disabled baby, should not be made at a time of great emotional trauma. Parents need to be given the time, space and support necessary to make an unpressured and unhurried decision and need to be told that keeping the baby is an alternative option for which full support will be given.
19. We should not allow ourselves to be manipulated by the media or those with an agenda. I was deeply shocked that the BBC would interview a deeply traumatised grieving woman who had just heard the most devastating news of her life in front of a national audience just days before one of the most horrendous experiences a woman can go through - aborting her own baby. More than this, such hard cases should not be used by media presenters with a wider political agenda of liberalising abortion laws (see Melanie McDonough in the Spectator). This was I believe both exploitative and abusive. Huge sensitivity is also needed with the language we use. These are babies living with anencephaly. They are not 'anencephalics', 'dead babies' or 'non-persons'. These are dehumanising terms. Just as we would not accept the terms 'spastic', 'moron', 'imbecile' or 'vegetable' to describe human beings, neither should we accept these.
20. Death is not the end. I have attempted to address the points above to a general audience but allow me one explicitly Christian argument. As a Christian I believe that human beings are made for eternity. This earthly existence is just the 'Shadowlands'. So when we think of loved ones, who have died with dementia, we do not think of them as they were but as they will be. Because of Christ's death and resurrection we look forward to the resurrection of the body into a world where there is no dying, mourning, death or pain. In this new world there will be no anencephaly. The Christian ethic is to treat all people as we would treat Christ and to treat others as Christ would have done. The bottom line is that we should treat babies with anencephaly as if they were Jesus himself, and treat them in the way he would have done.

I mentioned above an experience I had as a junior doctor which changed my attitudes to abortion and disability.

The administrative clerk on the medical ward where I was working was heavily pregnant and I asked her when she was due. She gave me the date and before I could say anything else said, 'my baby has anencephaly'. While I was inwardly asking why she had not had an abortion, she added, 'I could not bring myself to end the life of my own baby'.

The baby was born a few weeks later and survived about a week. She held it, nursed and cared for it and said her goodbyes before its inevitable death.

Up until that point I had not contemplated that such an approach was even possible. She not only demonstrated that it was but taught me a huge lesson about courage, compassion and how to face and handle tragedy, grief and bereavement. I have never forgotten it and resolved then, that if I was ever in the same situation I would want to do the same.

I have heard many similar testimonies since from women in similar situations who have made similar decisions and have become even more convinced that this is best way to handle it (See testimonies here, here, here, here and here and resources for parents here).

Having a baby with a severe disability changes one's life forever whatever choice one makes. But choosing to offer the hospitality of pregnancy and a mother's care and compassion to a dependent and severely disabled relative, and to be willing to shoulder the inevitable pain of separation and bereavement, is I believe the best way through this tragic situation.

Peter Saunders is Chief Executive of the Christian Medical Fellowship in the UK and was formerly a general surgeon. He also serves on the boards of the International Christian Medical and Dental Association and Coalition for Marriage and is campaign director for the Care Not Killing Alliance. This article has been republished with permission from Christian Medical Comment.

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