When I was pregnant with my baby girl, Líadán, we were advised at a scan that there might be an issue and sent to Dublin to have her checked out. At 24 weeks gestation, she was diagnosed with Trisomy 18, the same condition that doctors mistakenly believed was the prognosis for Baby Christopher Kiely whose parents won a High Court action this week.
I was told Líadán was ‘incompatible with life’, in the same way that Christopher’s parents were told he had a ‘fatal foetal abnormality’. Neither of those descriptions are medical terms.
We were obviously deeply shocked and upset. It’s possibly the most terrible news that a parent can receive. In my distress, I asked the doctor what we could do, meaning what could we do to help her. To my horror, he told me that I could ‘pop’ over to England – obviously to have an abortion.
I felt sick. We were in a modern maternity hospital in Dublin, and there was a 15-inch screen in front of me showing my little daughter. She was sucking her fingers, she was kicking, she was so beautiful. I knew now that she had this condition, and that she needed me and I would protect her.
Why was abortion the very first option offered to me – a distraught and terrified mum whose world had just been shattered? I wasn’t offered any information about the condition, such as a factual booklet or a website which might have helped me connect with other parents who had been in this situation. Instead I was told I could ‘pop’ off and end my daughter’s life. It still makes me angry.
That moment came flooding back to me this week when I read what Rebecca Price and Patrick Kiely were told about their unborn son, Christopher, when they were being advised to have an abortion. When the couple said that they weren’t afraid to take care of a sick baby, they were told their baby ‘wasn’t viable’.
In a statement, they said that they only considered the advice of their doctor to abort their child because they were told Christopher had no chance of survival.
It beggars belief that any doctor would say such a thing – but it underscores the dangerous culture and mindset that has arisen around this issue. Because abortion is a factor in the discussion that takes place after a poor diagnosis for unborn babies, the discourse has become politicised.
It is not true to say that all preborn babies with Trisomy 18 have ‘no chance’ of survival. That’s not my view, that’s what’s been evidenced by international medical research.
Research published in Pediatrics showed that, while a significant risk of miscarriage exists, children who live until birth with Trisomy 18 may have an average lifespan of 14 days; with 39% of babies living for more than a month, and 10% living for more than a year. A 2016 paper found survival in babies with Trisomy 18 “to be somewhat higher than those previously reported in the literature, consistent with recent studies reporting improved survival following more aggressive medical intervention for these children.”
Recently, an important editorial in the Journal of the American Medical Association concluded that “survival [for babies with Trisomy] is not as rare as once thought”, and acknowledged the role that parents networking on social media had played in bringing doctors to a better understanding of the value of the lives of our Trisomy babies, and the support needed by parents.
The experience of families where a baby has Trisomy 18 also matters, and research has found that almost all parents felt that their baby enriched their lives and the lives of their families, with 97% of parents describing their child as a happy child, despite their severe disability. Women described continuing their pregnancy when life was expected to be brief as a positive experience, in spite of the sorrow and grief if the baby passed away.
This is the information that should be shared with parents, instead of attaching a meaningless label to a child and pushing parents towards abortion. One study, published in the American Journal of Medical Genetics showed that a shocking 61% of parents reported feeling pressure to abort their baby after a diagnosis of a chromosomal disorder. (61%) and were told their baby would likely die before birth.
During the abortion referendum, along with other families who had been through negative experiences after receiving a poor diagnosis, I repeatedly asked Minister Simon Harris for a meeting to raise our fears that families would be pressured or pushed into abortion if safeguards were not put in place. We were ignored, and parents who raised their experience of being pressured even when the 8th was in place were often treated snidely or talked down.
Barely three months into the new regime, our worst fears were realised. Baby Christopher’s family say they never raised the issue of abortion, and that they were advised to have an abortion. We were told, and voters were assured, that this would never happen. But it has, and the truth is we don’t know how many other families have been affected in the same way. Both Simon Harris and Stephen Donnelly seem to be dragging their heels on an inquiry into the abortion of Baby Christopher. The media seem largely uninterested in examining whether the culture and mindset in maternity hospitals was a contributing factor.
What we do know, from our work in Every Life Counts, which offers support and advocacy for parents where baby has a life-limiting condition, is that abortion is now usually the first option suggested – and sometimes pressed – by doctors when a diagnosis of a condition like Trisomy 18 is made. Parents have told me that the repeated suggestions of abortion, the barely-concealed impatience at a decision to continue with the pregnancy, and the obvious failure to value their baby, has caused significant distress and added to the pain and heartbreak of subsequently losing their child.
In the light of what a High Court action has now revealed, this culture must end immediately. Families must be informed and supported, not pushed towards abortion and given incorrect information, distorted by personal opinion. Abortion must not be presented as the first and best option, and parents must be told that support groups and networks exist for families in their situation.
The media has a role to play in marking babies with severe conditions as ‘fatal abnormalities’ with abortion as the obvious option. They must now also give voice to those who wish to protect vulnerable families.
As I carried my baby girl, I asked my local consultant if she was in pain or discomfort and he told me all she could feel was me loving her. If our love could have saved her, she would have lived forever.
The shocking and deeply disturbing case of Baby Christopher, aborted after a misdiagnosis, lays bare shocking truth about families pushed towards abortion in Irish maternity hospitals. We were told it would never happen. Now we need to make sure it stops.
Vicky Wall works with Every Life Counts, a support network for parents