Do you know about - Alive and Kicking: Babies With a Fatal diagnosis Also Have a Right to Life
University Disability Services! Again, for I know. Ready to share new things that are useful. You and your friends."She was the most astonishing itsybitsy man 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 most days of my life with this itsybitsy girl and I could not fantasize life without knowing her." Dawn, whose baby girl Amanda, was born with anencephaly and lived for three days.
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These days, ultrasound scans give an unprecedented window to the womb. It's pretty astonishing for parents to see their baby fascinating 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 astonishing exceptions - or that he or she might not make it to birth at all.
Naturally, these are hugely traumatic and distressing situations, and every person would feel vast pity for parents faced with a fatal pathology for their baby. In the past fortnight, 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 convert in Irish law, and want the practises available in Britain to be made legal here. Those practises consist of 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 healing practitioner. And parents who are already distraught and in shock would be involved in the decision to end the life of their child. Can this de facto be the best riposte for parents and for baby in these very upsetting circumstances?
It's prominent 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 modern media reporting, but what's crystal clear is that all parents in this situation deserve much more than our pity - they need us to put expert sustain systems in place.
Many parents facing a fatal pathology 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, agreeing to prominent experts in the field, centres contribution this essential care are not difficult to design or maintain. In a modern narrative 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 staggering to die soon after birth. It offers nurses, chaplains, neonatologists, group workers, bereavement counselors and even a photographer to capture brief moments. "Time with the baby is extremely prominent 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 that "the only alternative parents are given is termination of gravidity or they're told they are on their own." This should plainly not be proper for a community which cares for its most vulnerable citizens..
Where abortion has come to be effortlessly available, up to 95% of babies diagnosed with anencephaly are aborted agreeing to the Kennedy design 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 sustain the contention that, once we remove the right to life from children with severe disabilities, the definition of being 'incompatible with life' stretches additional 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 modern 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 de facto not all the time the case. Children with Trisomy 18 or Edwards syndrome for example often live in the middle of 5 and 15 days after they are born, and 8% live longer than a year, agreeing 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 vast love they experienced in having the chance to share that time with their children.
The voices of those parents have been wholly shut out of the seminar in the past fortnight in Ireland. I spoke to one mom of a baby with anencephaly who treasured the time she spent feeling her baby fascinating and kicking before birth, and who then had several hours to say goodbye to her child. She told me that the way the current consider was being played out made her feel as if her itsybitsy girl's life was seen as being worthless; a judgment she passionately rejected.
Another mom pointed out that if demands to convert 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 potential 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 implicated for parents who feel that abortion is an answer, and warned that, in time, abortion may be seen as the only option by a condition aid 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 recommend 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 riposte than abortion. It was disturbing to see abortion campaigners like the Irish family Planning relationship endeavor to use these sad situations to additional their own agenda - which is to see abortion on request legalised in Ireland. Their only riposte to the trauma facing parents is to offer the medieval clarification of abortion. We are resolved to work instead towards a clarification that loves and protects both mom and baby.
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