Mothers in Ireland are giving their testimonies in support of a bill in the Irish Parliament that would support ending the use of the term “incompatible with life” to refer to unborn babies with significant disabilities.
One mother’s experience is particularly moving, as she says her baby only lived for 27 hours and that she never had the opportunity to hold him while he was alive for a short time.
The moms spoke in support in the Dáil in support of a Private Members Bill by Independent TD, Mattie Mc Grath, seeking to discontinue the ‘incompatible with life’ label.
Tracy Harkin, Sarah Nugent, Mandy Dunne and Fiona Cronin spoke to TDs and Senators at a meeting with parents from the support and advocacy group Every Life Counts, who have given a voice to families whose children were diagnosed with life-limiting conditions such as anencephaly, or Trisomy 18 or 13. Most of the women have given birth recently, and told of their distress and confusion at being told their baby was ‘incompatible with life’ – a phrase that is not just offensive but medically meaningless.
Fiona Cronin, whose baby son, Andrew, was born with anencephaly had a poignant and powerful message. In a press release from the group Every Life Counts to LifeNews, here’s what she had to say:
“My son Andrew actually lived for 27 hours after his birth with anencephaly. At that time doctors believed that it was better for mothers not to see or hold their baby if they had anencephaly, so they took him away and no one even told me Andrew was alive.
“He lived for 27 hours, and he could have spent them in my arms but instead I was told he had already passed away.
“That was a terrible loss for me – the loss of that time with my son. It made me realise though that we were right to make the most of our time together before he was born, the walks in the park, listening to the birds, singing songs for him, he knew he was with me and that I loved him.
“I’m glad that things have improved for mothers like me now, and that doctors realise that time together is so important and precious, and that mams can hold their babies and love them and smell them and remember what they looked like and how they felt in their arms.
“We can’t let Ireland go backwards, go back to a time when these babies where rejected and hidden away because they had a disability which took their lives away. That was wrong, and it’s wrong to dehumanise babies like Andrew by saying they are ‘incompatible with life’ or that they have less of a right to life because they are sick. “
Sarah Nugent whose baby girl Isabella was born in August 2014, said that her daughter lived for 54 days and that “the value of these short lives is being hugely underestimated.”
“Every single second I had with Isabella was special, every person who got to meet her and love her, now grieve for her with me. I cannot explain the impact she’s had. I’ll never forget the first time I got to hold her and take her in. She was so small, and so beautiful and my heart just burst with love for her.
She said that the term ‘incompatible with life’ meant “no help, no hope, and no intervention” for babies and families and that she wanted an end to discrimination against babies with profound disabilities.
Every Life Counts launched a global petition at the UN in Geneva in March to have the ‘incompatible with life’ label discontinued. It has already been supported by 320 medical professionals and 36 disability and advocacy groups.
The group said that it recognised that doctors and nurses are under enormous strain because of this government’s cutbacks and that believed that most, if not all, medical professionals would welcome additional training and support services in assisting families facing these very upsetting diagnoses.