My daughter is proof that the judge was wrong about 'fatal foetal abnormalities'
Published 04/12/2015 | 02:30
On Tuesday, along with thousands of parents right across the country, I was horrified to hear that Justice Mark Horner had said that some unborn babies, those he described as having a 'fatal foetal abnormality', were 'doomed' and did not have a 'human life to protect'.
I read his words as I sat with my daughter, Kathleen Rose, who is living with Trisomy 13, a condition often described as a 'fatal foetal abnormality'. We've just celebrated her 9th birthday with balloons, cake, family and friends - just like we have done for all our children. We treasure every day we have with her. She is the heart of our home.
I thought too, of all the families I have come to know because of Kathleen Rose, the parents who lost their beautiful babies to conditions like anencephaly and Trisomy 18. Families who had only hours, days or weeks after birth with their children, but who poured a lifetime of love into that short time, and who made memories and a pathway to healing after the pain of losing their child.
Many of those parents were deeply distressed at what Justice Horner said: at his description of their babies as undeserving of protection and at having to hear, yet again, more media reports where their children are dehumanised and their lives utterly devalued in order to campaign for abortion.
The Belfast High Court judgment follows a long string of commentators and activists who have called for abortion to be legalised for babies who are very sick and may not live for long after birth.
With all due respect to the learned judge, his remarks seemed horribly misinformed, not only regarding the lived experience of tens of thousands of parents, but of the research and progress made in recent times, and of the actual outcomes for babies diagnosed with a life-limiting condition.
He should have known, for example, that labels such as 'fatal foetal abnormality' are not a medical diagnosis.
As consultant obstetrician/gynaecologist Dr John Monaghan recently told politicians in Stormont, no doctor can say with certainty that an unborn child, however severe their disability, would not live until birth.
A 2012 paper entitled 'Fatally Flawed?', published in the British Journal of Obstetrics and Gynaecology, similarly found that a term like 'lethal anomaly' is not a medical prognosis, that the term hindered clear communication and should be avoided in counselling.
The researchers also found that no agreed list of lethal or fatal conditions existed in medical literature because, for all conditions, there were mixed outcomes - and babies often survived beyond birth, sometimes for much longer than anyone expected.
In fact, even as these diagnoses are made, baby is alive and kicking in the womb.
And contrary to much reporting in the Irish media around this issue, studies show that 72pc of babies diagnosed with anencephaly do live beyond birth, and children with Trisomy 13 and 18 live, on average, for between seven and 14 days after birth.
Some children, such as Kathleen Rose, go on to defy all expectations. Others like Lilly Ann Behan, who lived for six days with anencephaly, also defy expectations because, despite being described as 'doomed' or 'not worth protecting', they brought so much joy and love and pride to their parents.
"I was told she wouldn't live after birth, but she did, for six days. When you're told you'll get nothing, to get six days is a miracle. I'm so proud of Lilly Ann that she lived for six days. Everyone said they were coming to hold an angel," said Aileen Behan.
Figures from the British Department of Health show that more than 90pc of Irish parents who are told their baby has a condition such as anencephaly or Trisomy 13 do not seek an abortion. Many of these parents are now calling for better care, such as perinatal hospice care, to be made available, so that parents can be helped in a life-affirming way at this very traumatic time.
In contrast to perinatal hospice care, abortion can be a deeply distressing answer. This year, new research from Duke University found that women who had an abortion after a diagnosis of anencephaly were significantly more likely to suffer depression and despair than those who did not abort.
What many commentators fail to recognise is that our children's lives are important, not because of their ability or their longevity, but because every child is important, and every child should be protected. Our children are not 'anencephalics' or 'doomed foetuses' - they are babies with severe disabilities. They are human and deserve human rights. Justice Horner is simply wrong: their lives are worth protecting.
Tracy Harkin is a member of Every Life Counts