Open Letter

Open Letter by parents of children with Life Limiting Conditions


Our children are not 'incompatible with life’ - but they are compatible with love


A chara,

We are families whose children were diagnosed with life-limiting conditions such as anencephaly, or Trisomy 18 or 13. Because of this, our children have been labelled as 'incompatible with life', a medically meaningless, cruel, and hurtful term. We call on all medical, legal and media professionals to immediately cease the use of the phrase 'incompatible with life', which is not a medical diagnosis, and 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 they never knew anything but love. We 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 us. Our children are carved in our hearts forever.

We have listened in concern, then, to the debate on legalising abortion for children with profound disabilities. We understand, better than most, that receiving a diagnosis of a limited life for your child is a hugely upsetting experience, and that parents need better care at this time. Most of all parents need to be given factual information and support. Too often, they are nudged and pushed towards abortion, and are denied the precious time that we experienced with our children; a time which helped us to heal.

In particular, we have recently seen commentators claim that we caused our children pain because we did not abort them, while others have insisted that our children were 'incompatible with life', and were dismissive of the view that their lives had value. The first allegation is simply dreadful and has caused huge distress to parents who have already lost their children. Children born with a life-limiting condition are entitled to the best care possible. Our babies were made comfortable after they were born, and those who passed away did so peacefully in our arms. In sharp contrast, abortion ends the life of a child with a profound disability in the same manner as it does for any unborn child, and in this case these are often late-term abortions.

Secondly, the truth is that there is no condition, none whatsoever, where a medical professional can say that a child will certainly die before birth. Some of our children spent just hours or days in their parents' arms before they passed away. Others defied all expectations and lived for much longer. Kathleen Rose Harkin has just celebrated her 8th birthday with Trisomy 13, often described as a 'fatal foetal abnormality', while Elaine Fagan made medical history living for 25 years with Trisomy 18, or Edwards Syndrome.

Over 90% of Irish parents facing a life-limiting diagnosis continue with their pregnancy. The phrase 'incompatible with life', must cease to be used immediately, since it is unhelpful, misleading and hurtful. Our children's disability may have been profound, but they were alive and kicking in the womb.

These are our most special children. They deserve better than abortion. Their families, like ours, deserve better care and support, following the model of perinatal hospice care. Most of all, families deserve not to be misinformed, and to have their children's lives respected.

Is mise,

Tracy Harkin, Co. Cavan,
Tom Harkin, Co. Cavan,
Aileen Behan, Co. Kildare,
Gemma Bradley, Co. Derry,
David Bradley, Co. Derry,
Tanya Coonan, Co. Tipperary,
Mandy Dunne, Co. Wexford,
Tom Dunne, Co. Wexford,
Kay Fagan, Co. Limerick,
Michael Fagan, Co. Limerick,
Sarah Hynes, Co. Dublin,
Stephen Hynes, Co. Dublin,
Clíona Johnson, Co. Dublin,
JP Johnson, Co. Dublin,
Lynn Kee, Co. Dublin,
Leanne Kendal, Co. Down,
Darren Kendal, Co. Down,
Charlene Mc Cabe, Co. Antrim,
Gareth Mc Cabe, Co. Antrim,
Derbhille Mc Gill, Co. Antrim,
Sarah Nugent, Co. Laois,
Liz Rothwell, Co. Laois,
Grace Sharp, Co. Wexford.

This letter was published in the Irish Independent (last letter on page)