Note: This is a long post but the
main points can be easily scanned. You can listen to my interview on the Stephen Nolan show on BBC Radio Ulster on this issue here.
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
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
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
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
Anencephaly is not uncommon, occurring in 1 out of 1,000 pregnancies,
but only 3 out of 10,000 live births. Over 95% of parents opt for
abortion in countries where this is legal and 208
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
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
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
2. A baby with anencephaly is not
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
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
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
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
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
to talk about abortion for disability as a ‘coercive offer’. Reist’s
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
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
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
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
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.
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
and resources for parents here