Irish families who have lost children to life-limiting conditions such as anencephaly and trisomy 18 have called on medical, legal and media professionals to stop using the term “incompatible with life” to describe unborn children.
At the launch of the ‘Compatible With Love, Compatible With Life’ campaign by the support group Every Life Counts last week, spokeswoman Tracy Harkin said the term is “medically meaningless, incorrect and enormously hurtful”, and said it was a judgment rather than a medical diagnosis, the Irish Times reports.
As part of the campaign, Independent TD Mattie McGrath is proposing an amendment to the Disability Act in the Dail which would make it an offence for medical staff to describe an unborn child with a disability as “incompatible with life”.
‘Compatible with Love, Compatible with Life’ is also writing to obstetricians and gynaecologists across the country to urge ending the term “incompatible with life” and seeking a model of perinatal hospice care in hospitals.
“These words need to be discontinued in the same way that ugly descriptions such as ‘retarded’ or ‘illegitimate’ were discontinued since they have no part in a compassionate society,” said Harkin
“It’s important to note too that the description ‘incompatible with life’ is not just hurtful, it is also incorrect and misleading, which makes it a statement that should never be used by anyone working in our health system,” she continued.
“We know that parents are usually left reeling in shock after hearing a diagnosis of a condition such as Trisomy 13 or anencephaly and that misleading language is the last thing they need to hear,” she said.
“The Disability Act precludes terminology and references to people with disabilities,” McGrath said. “This is just an extension of the act, really, an amendment . . . to include the unborn.”
One mother, Mandy Dunne, was 20 weeks pregnant when her baby Muireann was diagnosed with Patau’s Syndrome. “I was told the condition was ‘incompatible with life’: now for most people they are just words, but I heard them as I hugged my pregnant belly tight trying to come to terms with the fact that my little baby might not make it to our arms. I felt those words took her life from me there and then. “
“They made me feel I wasn’t carrying a beautiful little girl, but that I was carrying merely a mass of disfigured cells that was supposed to be a baby but wasn’t; that it was something that didn’t even have the right to be considered as a life, dismissed with suggestions of terminations as she kicked and wriggled inside my womb. Those words instil a fear inside parents, and that’s not what parents or their baby needs.”
Mandy’s baby, Muireann, went on to live with her family for six weeks after birth. Harkin’s daughter, Kathleen Rose, was prenatally diagnosed with trisomy 13, which is described as “incompatible with life” but recently celebrated her 8th birthday.
Karen Ludden, a paediatric nurse who advises Every Life Counts, said it could not be predicted, in any medical condition, whether a baby would live, how long it might live, or whether it was incompatible with life. Every Life Counts also quoted obstetrician Dr. John Monaghan, who recently told the Northern Ireland Assembly, that “incompatible with life” is not a medical diagnosis and that “there is no condition where a medical professional can say that a child will certainly die before birth.” They said that they had already received letters of support from healthcare professionals on foot of a letter in the Independent last week calling for an end to the term “incompatible with life.”
