"We're going to the UN to say that our babies were not 'incompatible with life'

Irish families will travel to Geneva on Wednesday to launch a major global initiative to stop lethal and discriminatory language being used regarding unborn children with disabilities. Language such as the phrase 'incompatible with life' is causing "lethal discrimination against children diagnosed with severe disabilities, both before and after birth", a conference hosted by the families at the United Nations in Geneva will hear.

The families - members of the Every Life Counts support group - have joined with disability groups internationally to launch a global campaign to discontinue the use of the phrase 'incompatible with life'. They say that although the phrase has become common currency, it is not a medical diagnosis, that it misleads parents, and that it prevents best care for children and families both before and after birth.

The conference at the UN will hear evidence that the phrase 'incompatible with life' is devaluing and dehumanising children diagnosed with a severe disability with negative and sometimes lethal consequences for those children before and after birth. A new medical declaration, the Geneva Declaration on Perinatal Care, will also be launched, which aims to enlist the support of medical professionals in ensuring the phrase is not used in counselling families. It has already been signed by some 200 medical professionals.

The Declaration states that: 'As medical practitioners and researchers, we declare that the term "incompatible with life" is not a medical diagnosis and should not be used when describing unborn children who may have a life-limiting condition' and also calls for better perinatal care for families.

The conference, which will take place on March 11th, is included in the UN programme for the 28th Session of the Human Rights Council when the council dialogues with the Special Rapporteur on the rights of persons with disabilities. It is being sponsored by the Irish-based organisation Every Life Counts, working with the International Trisomy Alliance, the European Centre for Law and Justice, and others. A written statement explaining the initiative is being circulated to every delegate at the UN session.

Medical experts in obstetrics, neonatology, and perinatal hospice will join families at the conference in showing that the term is not a medical diagnosis. They will argue that the phrase should be discontinued, just as offensive and discriminatory terms such as 'retard' and 'cretin' have been in the past.

All families have either lost their children to conditions such as anencephaly and Trisomy 13, or have children who were described as 'incompatible with life' but are still living.

"We've linked up with disability rights groups, support groups and medical experts right around the world because the misinformation needs to stop. We're calling on medical professionals to stop using this term, because it misinforms parents, it pushes families towards abortion, and it denies them a chance to spend time with their children, to make memories and to heal," said Tracy Harkin of Every Life Counts.

She said that 'incompatible with life' was a medically meaningless term because no doctor could say with certainty that a child, however severe their disability, would not live until birth. "Every child is compatible with life, and compatible with love," said Ms Harkin. "We need to work together to get the best care for families and to stop language that is leading to lethal disability discrimination."

"We've heard mothers like Mandy Dunne, whose baby girl Muireann lived for six weeks after birth with Trisomy 13, say that 'I felt those words took her life from me, there and then. Those words instil a fear inside parents, and that's not what parents or their baby needs'. Other mothers like Barbara Farlow from Canada, who is a researcher in this area, will show that the use of the phrase can lead to a reluctance to carry out beneficial interventions after birth. This is a global problem, leading to discrimination against many thousands of children like our children, and we need the use of this phrase to be discontinued."

Ms Harkin said that the families wanted to challenge the United Nations to recognise the dignity and value of all children with terminal illness and disability.

The UN Convention states that 'States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children'. The Preamble to the UN Convention on the Rights of the Child also states that a child 'needs special safeguards and care, including appropriate legal protection, before as well as after birth'.

"Yet studies show that up to 90% of children with disabilities are aborted before birth. In particular, children with life-limiting conditions are subject to discriminatory language and attitudes which deny them their humanity and their human rights. Families who are told that their baby may not live for long after birth need our full support and holistic perinatal care, but this can only be achieved if misleading and offensive language and attitudes are discontinued," said Ms Harkin.   

Speakers at the event include:

Professor Giuseppe Benagiano, (Former Director, Special Programme of Research, Development and Research Training in Human Reproduction, WHO, ITALY)

Dr Ana Martin Ance (Neonatologist, expert in perinatal hospice care SPAIN): Achieving standards of excellence in Perinatal Palliative Care.

Professor Bogdan Chazan (Obstetrician, POLAND) : Advocating better care instead of abortion for babies with a challenging diagnosis.

Barbara Farlow (Researcher, co-founder of International Trisomy Alliance, CANADA): 'Incompatible with life' is medically meaningless, dehumanising and should be discontinued.

Deputy Mattie Mc Grath (Member of Parliament, IRELAND) : Legislation which protects children and families: a practical solution.

Tracy Harkin (Spokeswoman for Every Life Counts, mother to a daughter aged 8 with Trisomy 13, IRELAND) : A global call to discontinue the phrase 'incompatible with life' - and how the UN should respond.

Joined by mothers from Republic and North of Ireland - Grace Sharp, Sarah Nugent, Sarah Hynes, Derbhille McGill and families from Germany, France, Spain and Canada

See more here: http://www.everylifecounts.ie/achieving-excellence-in-perinatal-care