Parents of children who were deemed to be ‘incompatible with life’ will head to the United Nations in Geneva next week for the start of a campaign to discontinue the use of the diagnosis.
Irish pro-life organisation ‘Every Life Counts’ has arranged the trip for 11 March, when families will join medical experts for the launch of the Geneva Declaration on Perinatal Care.
The declaration affirms that the term ‘incompatible with life’ is not a medical diagnosis and should not be used to describe an unborn baby who may not live for very long after birth.
Love of their lives
A spokeswoman for Every Life Counts, Tracy Harkin, is attending the event. Her daughter Kathleen Rose was diagnosed with Patau’s Syndrome after she was born, a condition normally deemed ‘incompatible with life’.
But Kathleen Rose is now eight years old – Tracy and her family describe her as the love of their lives.
A statement on Every Life Counts’ website says: “We are calling on the global medical community, the media and other bodies of influence to commit to ending the misinformation, which is confusing and hurting families, and denying children with illness and disability the care they deserve.”
The group highlighted the UN Convention, which says that member states should “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”.
Every Life Counts is calling for better quality care after babies with severely life-limiting disabilities are born.
This comes just weeks after the Irish Parliament voted against weakening the law to allow abortion if two doctors agreed that the unborn child had a condition which was “incompatible with life outside the womb”.
Right to life
Politicians voted 104 to 20 against the Bill, after the Government was advised that the plans would go against the country’s constitution, which holds the right to life of the unborn child as equal to that of the mother.
The Christian Institute has highlighted stories of parents in the UK who were told their child had a severely life-limiting disability but chose not to have an abortion.
Melanie and Damien Sheenan’s baby, Joshua, is now over a year old after doctors made an incorrect diagnosis of his condition in the womb.
Bonnie and Phil Walker’s daughter Grace was diagnosed with a severely life-limiting disability in the womb, and she died shortly after birth.
But the Walkers described the time they spent with baby Grace as “15 minutes of pure love”.
The Department of Justice in Northern Ireland recently consulted on weakening the law to allow abortion in cases of fatal foetal abnormality and sexual crime.
The department has recommended that abortion should be permitted when the unborn child is deemed not to have a “viable” life.