“She was the most amazing little person I could ever put my eyes on. I kissed her and cried .... but most of all I just loved her and held her. I had the 3 greatest days of my life with this little girl and I could not imagine life without knowing her.”
- Dawn, whose baby girl Amanda, was born with anencephaly and lived for three days.
These days, ultrasound scans give an unprecedented window to the womb. It’s pretty amazing for parents to see their baby moving and growing as she or he comes to birth.
But this technology also allows us to see when something is wrong with baby, and, on rare occasions, disorders such as anencephaly or Trisomy 18 show up on the ultrasound. This can mean that baby won’t live for long after birth - though there are some truly astonishing and wonderful exceptions - or that he or she might not make it to birth at all.
Naturally, these are hugely traumatic and distressing situations, and everyone would feel enormous sympathy for parents faced with a fatal diagnosis for their baby. In the past month, the Irish media has been saturated with the testimonies of Irish women who, having received such diagnoses, went to Britain to have their babies aborted. They are now calling for a change in Irish law, and want the practises available in Britain to be made legal here. Those practises include what is known as feticide, where the baby, alive and kicking in the womb, receives a lethal injection into the heart.
Whether by feticide then, or by some other method, the lives of babies with fatal disabilities would be ended, not by allowing nature to take her course, but by the intervention of an abortionist or other medical practitioner. Can this really be the best answer for parents and for baby in these very upsetting circumstances?
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It’s important to look at the reality of what’s currently happening in Ireland and at the outcomes for children diagnosed with a fatal abnormality.
These fatal diagnoses are rare, but they happen, and one of the things that has not been acknowledged is that most Irish mothers in these situations carry their babies to term. The Irish Times reported that up to 90% of mothers do not elect to abort their children in these circumstances. You could be forgiven for thinking that the opposite was the case because of recent media reporting, but what’s crystal clear is that all parents in this situation deserve much more than our sympathy - they need us to put professional support systems in place.
That’s why the Life Institute has written to the Minister for Health urging him to establish perinatal hospice services as expeditiously as possible. Many parents facing a fatal diagnosis believe that their children would suffer unbearably following birth - and are not made aware that perinatal hospice care would work to eliminate that suffering.
The good news is that, according to leading experts in the field, centres offering this essential care are not difficult to establish or maintain. In a recent article in the Washington Times, Dr Byron Calhoun of West Virginia University, explained that “all the typical hospital needs is a few extra rooms for these families.” Dr Calhoun explained that the perinatal hospice movement supports parents of children expected to die soon after birth. It offers nurses, chaplains, neonatologists, social workers, bereavement counselors and even a photographer to capture brief moments. “Time with the baby is extremely important to these moms,” he said. “Families want a live birth, a baptism, a chance to hold the baby; to give as much love a child can have in their brief life.”
As Dr Calhoun pointed out, “the only alternative parents are given is termination of pregnancy or they’re told they are on their own.” This should not be acceptable for a society which cares for its most vulnerable citizens.
Where abortion has become readily available, up to 95% of babies diagnosed with anencephaly are aborted, according to the Kennedy Institute of Ethics at Georgetown University. And, tragically, this rate then becomes the norm for babies diagnosed with other conditions, such as Downs Syndrome or Cystic Fibrosis. The facts seem to support the contention that, once we remove the right to life from children with severe disabilities, the definition of being ‘incompatible with life’ stretches further and further.
That’s because we cannot get away from the core ethical principle which must underpin all these discussions: unborn children - whatever their disability, and however short their life may be - have a right to life.
It’s to be regretted then, that recent reporting has sometimes been badly misinformed. For example, the ability of these special children to spend precious time with their parents has been - deliberately or otherwise - vastly understated. It’s been repeated again and again that children with fatal diagnoses are ‘incompatible with life’ - a statement that has correctly been described as a judgment rather than a diagnosis. The impression is given that they will never live, even briefly, after birth, but that’s certainly not always the case. Children with Trisomy 18 or Edwards syndrome for example often live between 5 and 15 days after they are born, and 8% live longer than a year, according to the Trisomy 18 Foundation.
Anencephalic babies similarly often live beyond birth, however briefly. Their parents, broken-hearted and devastated though they may be, have spoken most movingly and courageously of the great joy and tremendous love they experienced in having the opportunity to share that time with their children.
The voices of those parents have been completely shut out of the discussion in the past month in Ireland. I spoke to one mother of a baby with anencephaly who treasured the time she spent feeling her baby moving and kicking before birth, and who then had several hours to say goodbye to her child. She told me that the way the current debate was being played out made her feel as if her little girl’s life was judged as being worthless; a judgment she passionately rejected.
Another mother pointed out that if demands to change the current law succeeded, the right to life of all babies with fatal diagnoses would be taken away. Her baby boy would have had no inherent right to life: whether he lived or died wouldn’t have been about the tragedy of his disorder any longer - it would have been solely down to the decision made by his parents.
She also said she was very concerned for parents who feel that abortion is an answer, and warned that, in time, abortion may be seen as the only option by a health service reluctant to spend resources on babies who they feel are ‘better off dead’. Research in this area is pretty thin, but one 2005 Dutch study suggested that women who aborted for reasons of foetal abnormality showed severe post-traumatic stress up to seven years later.
It comes down to this: whatever the crisis, we can find a better answer than abortion. It was disturbing to see abortion campaigners like the Irish Family Planning Association [a Planned Parenthood affiliate] attempt to use these sad situations to further their own agenda - which is to see abortion on demand legalised in Ireland. Their only answer to the trauma facing parents is to offer the medieval solution of abortion. We reject that solution - and are resolved instead to work towards a answer that loves and protects both mother and baby.
- To see testimonies from parents who’ve carried their children to term see www.benotafraid.net
- Also read the amazing story of Baby Faith Hope who lived with anencephaly for 93 days on this beautiful blog written by her mother Myah.
- The Dutch study can be read here: Korenromp, Christiaens, van den Bout, et al, ‘Longterm psychological consequences of pregnancy termination for fetal abnormality: a cross-sectional study,’ Prenatal Diagnosis, 2005 March 25(3), 253-60,