An irish group will travel to the United Nations in Geneva on Wednesday in an attempt to end the use of the term “incompatible with life”.
Every Life Counts said the phrase is not a medical diagnosis and “dehumanises unborn babies with a disability”.
The group, with is run by parents who were told their children had fatal foetal abnormalities, believes the term is as offensive as “retard” and “cretin”.
Tracy Harkin was told her daughter Kathleen Rose, who has Trisomy 13, would not live beyond a few days. She is now eight years old.
Harkin described her daughter as “the heart of her home, she’s just a wee character”.
Harkin said the families involved are “not trying to run away” from severe diagnoses, but that having incompatible with life “tagged on her forehead” affected the level of care her daughter received.
She added that “huge trauma” is attached to abortion, and if terminations are allowed under these circumstances she fears it will become the “convenient” and “cost-effective” option for medical staff.
Some 25 groups including the International Trisomy Alliance, SOFT, the Lejeune Foundation and Now I Lay Me Down To Sleep are supporting the initiative to ban the use of the term.
‘Doctors are not gods’
Sarah Hynes’s son Seán had Trisomy 18, also known as Edwards syndrome. He lived for two days after his birth last August.
Hynes said her son received inadequate care after his birth, and was essentially “left to die”.
She recalled that when she asked for help feeding him she was told by a nurse: ”Try it yourself and if he doesn’t take it it doesn’t matter.”
“Doctors are not gods, they can’t tell you ‘Look, this child is going to die now’, they can’t see into the future … Some children do live, it’s not all horror stories,” she added.
Independent TD Mattie McGrath plans to introduce a private members bill in the Dáil before the end of the month to “amend and broaden existing legislation here and which is aimed at regulating for the prohibition of the term, specifically in a medical context”.
McGrath will be travelling to Geneva with the group.
My PMB is certainly in that tradition as well as in the tradition of the campaign spearheaded by then Senator Mary Robinson who worked tirelessly to have such offensive terms as ‘illegitimate child’ discontinued in the 1970s.
“I hope at the very least that the Geneva Declaration will encourage all of us to look more closely at perinatal care options that exist here and in other countries and which would be well worth advocating as an alternative to a policy which proposes abortion as the only option,” McGrath said.
McGrath said he hopes the bill will “introduce some degree of humanity”, adding that he has “support from all sides of the house”.
Last week Labour TD Michael McNamara introduced a bill to allow for the termination of pregnancies in cases involving fatal foetal abnormalities.
A bill on the same issue, put forward by independent TD Clare Daly, was rejected by 104 votes to 20 last month. The government argued it was unconstitutional.
At its Ard Fheis at the weekend, Sinn Féin voted to support abortions in cases of fatal foetal abnormalities.