I KNOW WHAT it’s like to be told your much-loved and yearned-for baby is ‘incompatible with life’. It’s not just the shock and the fear that hits you, it’s the harshness of the words, as if your child is suddenly less than human, as if she is no longer alive and kicking despite the fact that you can feel her movements and you desperately want this diagnosis to be wrong.
For my daughter, Kathleen Rose, the diagnosis wasn’t wrong. She has Trisomy 13, a severe condition that doctors seem to always, always describe as ‘incompatible with life’. But they were wrong about her outcome. She’s eight years old now and is a real little character. Despite her ‘imperfections’ she has enriched our lives immensely and I wouldn’t swap her for the world.
Pictured: Kathleen Rose
I know that I am one of the lucky ones. Many babies with Trisomy 13 do not live for more than a year, and most parents I know through the beautiful life-affirming initiative Every Life Counts have lost their babies to this condition, or to others such as anencephaly or Edward’s Syndrome. Some of their children lived for just hours after birth, others for days or weeks. But, however short our children’s lives may be, we’re glad that Deputy Clare Daly’s proposal to allow abortion in the case of profound disability was voted down.
A flawed bill
That’s because the proposed abortion bill was not only flawed, it was discriminatory, and it threatened the right to life of all children with disabilities.
It was flawed because it sought to state that there is a category of medical conditions which can be described as ‘incompatible with life’. In fact, that term is not a medical diagnosis. New research shows that no such agreed set of conditions exist in the medical literature, and that phrases like ‘lethal anomaly’ should not be used in counselling.
It was flawed because it assumed that legalising abortion simply gave parents a choice, albeit a choice dependent on the opinion of medical practitioners regarding the life-expectancy an unborn children. But a recent Parliamentary Inquiry in Britain on abortion for unborn children with disabilities produced some disturbing findings. The Bruce Inquiry found that parents came under pressure to abort if the baby had a disability and that parents felt they did not receive adequate information about other options, including palliative care after birth.
What has really shocked me is that many families in Every Life Counts tell me they had a similar experience in Irish hospitals, where travelling for an abortion to Britain was repeatedly suggested and encouraged as a ‘best option’. As one mother told me: “They didn’t seem to understand that I was not going to abort him because he was my son, and the hope that I could have even a few moments with him in my arms meant everything to me. Their attitude devastated me, I felt I was battling them, as well as this terrible condition, for the life of my child.”
A change in the law could help to establish a culture where a ‘choice’ soon becomes an expectation.
Abortion is not a short-cut through grief
Furthermore, the choice envisaged by Clare Daly’s bill has a reality, and that reality is usually late-term abortion, where the baby receives a lethal injection straight into the heart and the mother must give birth to a dead child. Abortion is not a short-cut through grief, and it denies parents the inestimable gift of time with their babies, a chance to pour a lifetime of love into hours or days, to make memories, to surround baby with care and to let them know they are precious and loved whatever their disability.
But, most of all, the Bill was flawed because it presumed that it is acceptable to legally discriminate against a child because of a disability. The law would have chosen to deny the right to life to just one category of children. To defend this position, advocates of the Bill tried to say that unborn children who suffered conditions like my little girl, Kathleen Rose, were not really human: they were ‘unviable unborn’ or abnormal, or already dead or ‘simply a piece of flesh with no sensation’ as one Senator said.
The cruelty of the language used in this debate was literally staggering. It would be simply unacceptable in any other circumstances for anyone to use these grossly offensive and misleading terms to describe children who are alive and kicking. The complete lack of sensitivity or compassion for their parents, already heartbroken by bereavement and loss, is extraordinary. These are much-loved babies, beautiful in the same way that every child is beautiful, loved in the same way that every child is loved. Their lives had meaning, and they mattered. That I have to defend their very existence is indicative of how harsh and unfeeling this debate has become.
We want better services for parents and their babies
We can see in other jurisdictions where this attitude and change in law has led. The Bruce Inquiry found that more than 90% of children with Down Syndrome in Britain are aborted before birth. It seems that a change in the law inevitably leads to the outcome where any disability becomes a barrier to the right to life. We have the chance to learn from this chilling British experience.
No one wants to pit families against each other: we all want better services for parents and their babies. I’m glad Clare Daly’s bill was voted down because I know that love and real support, like perinatal hospice care, can make this devastating diagnosis more bearable and can bring real healing. To really help families, the Independent TD, Mattie McGrath, has proposed a Bill which would discontinue the phrase ‘incompatible with life’ in Irish health services and ensure parents are not misinformed. That’s a proposal worth supporting.
Tracy Harkin is a mum and a spokesperson for Every Life Counts.
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