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Irish families who have lost much-loved babies to life-limiting conditions such as anencephaly and Trisomy 13 have welcomed growing support for proposed legislation by Independent politician Mattie McGrath which seeks to ensure the phrase 'incompatible with life” is discontinued since it is 'medically meaningless, misleading and extremely hurtful to parents'. 

The heads of the bill were presented by Mattie McGrath, TD, at a press conference held this week by families in Every Life Counts to launch a campaign to end the use of the term 'incompatible with life', and to seek improved services for families whose unborn children have been diagnosed with a profound disability which means they may not live for long after birth.  

“We are really pleased that a cross-party support is growing in support of Deputy McGrath's Bill, and that this initiative also has the backing of leading disability campaigners such as Senator Mary Ann O'Brien and Michael Fagan, founder of SOFT Ireland,” said spokeswoman Tracy Harkin.

At the press conference, Deputy McGrath said that he had been very moved by the testimony of the mothers who spoke at the event, and called for widespread support for the initiative. “It is totally unacceptable that families hear this phrase used about their babies, and we need to ensure that its use ends immediately,” he said.

Ms. Harkin said that the families wanted to send a direct message to all commentators and healthcare professionals. “We know that the term 'incompatible with life' is a medically meaningless, incorrect and enormously hurtful term, and we call on all medical, legal and media professionals to immediately cease the use of the phrase.

“We are calling this campaign the Compatible With Life, Compatible With Love campaign because we recognise that the phrase 'incompatible with life' is not a medical diagnosis: rather, it's a judgment which is used to deny the humanity of our children and the value of their lives.”

“Some of our children's lives were all-too-short, but one thing we know for sure is that they were compatible with love. Their parents had the chance to hold them in our arms, to meet them, and surround them with love, sometimes even if only for a brief time, and that meant everything to them,” she said.

“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. 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.

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 surrounded by love.

Tracy Harkin's daughter Kathleen Rose attended the event: and as her mother pointed out “she has Trisomy 13, a condition described as 'incompatible with life', but she has recently celebrated her 8th birthday, and she has brought our family great love and great joy.”

The Every Life Counts group said that yesterday in Stormont, obstetrician Dr. John Monaghan 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.”

“We recognise too that doctors and nurses are under enormous strain because of this government's cutbacks and we believe that most, if not all, would welcome additional training and support services in assisting families acing these very upsetting diagnoses,” said Ms. Harkin.

Every Life Counts hope to reach to every obstetrician and gynaecologist in Ireland with an open letter from parents in the organization as well as contacting politicians, media groups and the public with the Compatible With Life, Compatible with Love campaign.

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