Open Letter to Citizens' Assembly
Dear Justice Laffoy and the members of the Citizens' Assembly,
As parents whose children have been diagnosed with life-limiting conditions such as anencephaly or trisomy 13 we were shocked and dismayed at your decision to use the misleading term 'fatal, foetal abnormality' when discussing such conditions at the Assembly. We are asking you to reconsider your decision to use the term, since it does provide clarity in the debate but does cause enormous distress and hurt to parents whose babies have died. We are also asking that the voices of parents be heard at the Citizen's Assembly so that members can hear the views and experiences of the majority of families who are currently being ignored.
In the past two years in particular, legal experts, medical professionals and parents have all confirmed that the phrase 'fatal, foetal abnormality' is not just offensive, it is medically meaningless and deeply misleading. This outdated and ignorant expression has no place in a meaningful discussion about the support required for parents facing the devastating news that their baby may not live for long after birth. The correct term 'life-limiting condition should be used, as was decided by the HSE recently.
As you will know, we submitted our stories and testimonies regarding the importance of our children's lives to the Assembly. It may be worth reminding you of why we feel so passionately that our children should have the same right to life as every child.
Tracy Harkin writes: "My daughter, Kathleen Rose, has Trisomy 13 – described in the media as a 'fatal, foetal abnormality' - but we've just celebrated her 10th birthday. This is a meaningless and most offensive phrase, which doesn't inform parents, and is being used to dehumanise children like my daughter, and argue for abortion. I am appalled that at the use of a discriminatory and politically-loaded term in an Assembly which should be seeking to uncover the facts and the best way to support families."
Tanya Coonan: "My little girl Lillie lived for two hours after birth. She was my daughter, not a fatal foetal abnormality. I had the chance to hold her. I smiled at her beautiful baby face and kissed her warm, soft cheek and held her tiny little hand. Her disability should not have taken away her right to life – and every baby like Lillie deserves protection."
We are seeking an opportunity to be heard because you, the members of the Assembly, have already heard that our babies were 'fatal abnormalities' and we'd like you to hear the real, lived experience of the majority of parents who love our babies for those all-too-short lives – lives which have real value and meaning, and brought nothing but love.
We'd also like to remind you that:
- Research shows that there is no agreed category of medical conditions which can be described as 'fatal' or 'lethal, since for all of these conditions, research shows that children have lived beyond birth, sometimes for years. (1) In fact, even with the most severe disorders, such as anencephaly, studies show that most babies do, in fact, live after birth and that parents will have time to make memories with their children.
- Research shows that 72% of babies with anencephaly live after birth, even briefly, while babies with Trisomy 13 or 18 have lived for weeks, months and years after birth. Parents should not be deprived of the love and joy that comes from this precious time. (2,3)
- The Royal College of Obstetricians and Gynaecologists have pointed out that the phrase 'fatal, foetal abnormality' is not to be found in any medical textbook, with Dr Jim Dornan telling BBC (03/12/2015) that it was not a medical term and that "no doctor knows exactly when a foetus is going to die".
- The HSE, in revising its Standards National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death decided to use the more correct term 'life-limiting condition'. (4)
- The Chief Medical Officer advised Health Minister Simon Harris that the phrase 'incompatible with life' was flawed because "the circumstances in which such a situation would arise do not exist in medical practice."
We also know that most of you will have read many media reports calling for abortion to be legalised for babies like ours. Most parents in Ireland continue to carry their baby in these circumstances, yet our voices have been mostly ignored in the debate so far. We ask that you hear a balanced debate before a rush is made to remove the right to life of sick babies.
The families in Every Life Counts, proud parents to babies whose lives were limited but who are greatly loved and valued.
(1) Wilkinson, D.J.C., Thiele, P., Watkins, A., and De Crespigny, L. Fatally flawed? A review and ethical analysis of lethal congenital malformations. Br J Obstet Gynaecol. 2012; 119: 1302–1307
(2) Jaquier M, Klein A, Boltshauser E. 'Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly.' British Journal of Obstetrics and Gynaecology 2006; 113:951–953
(3) Nelson KE, Rosella LC, Mahant S, Guttmann A. Survival and surgical interventions for children with trisomy 13 and 18. JAMA. doi:10.1001/jama.2016.9819.
(4) HSE National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death.