Abortion campaigners often ignore the distress insensitive language causes parents, writes Tracy Harkin
Tracy Harkin
Parents whose unborn babies have been diagnosed with life-limiting conditions such as anencephaly and Trisomy 13 understand all too well the power, and the potential harm, of language.
These babies are alive and kicking at the time of diagnosis, and their severe disability should not be used to undermine their right to life. Yet parents often feel towards pushed abortion by the use of misleading phrases like ‘incompatible with life’, which add to the fear and uncertainty families feel for their baby. “I felt those words took her life from me there and then,” one mother has testified, and others have spoken powerfully at the United Nations (UN) calling for an end to these discriminatory and hurtful phrases.
Yet, as the media debate on abortion escalates in Ireland, we’ve seen a sharp increase in the use of upsetting and medically meaningless labels like ‘fatal foetal abnormality’ and ‘incompatible with life’.
These are not medical phrases; they are not, as Prof. Jim Dornan has pointed out, found in any medical textbook. As he put it: “we are all fatal, and a life of a few minutes can be as perfect as a life of 60 years”.
The Geneva Declaration on Perinatal Care, which acknowledges that the phrase ‘incompatible with life’ is not a medical diagnosis, has been signed by hundreds of medical professionals, and research in peer-reviewed journals recognises that there are no conditions which can be correctly described as ‘lethal’ or ‘fatal’ since babies do live beyond birth, even with the most severe disabilities.
Yet these phrases are still continuously used by abortion campaigners to dehumanise babies with a severe disability; to make them appear less than human and to justify taking away their right to life. Babies like ours are being used, it seems, as a means to overturn Ireland’s constitutional ban on abortion.
For the many thousands of Irish parents who have lost their beautiful and much-loved babies to these conditions, this has been a difficult time, and it is appalling that they have had to endure their children being described by words that are hurtful, cruel and offensive. Yet they have persisted in asking for respect to be shown to their children, and for the more correct phrase, life-limiting conditions, to be used.
They have also campaigned for better care to be made available for families who face such a devastating diagnosis, focusing on the life-affirming alternative of perinatal hospice care, and seeking improved bereavement counselling services to help families through the heartbreak.
Now a major new report from the HSE has noted that there is “no agreed definition of phrases such as ‘fatal anomaly’,” and that “neither is there a legal definition for foetal anomaly that may be fatal, or an agreed list of conditions associated with fatal foetal anomaly.” Furthermore, it notes that “an assessment of the seriousness of a foetal abnormality should be considered on a case-by-case basis, taking into account all available clinical information.”
The HSE’s Standards for Bereavement Care says that it chose to use the term ‘life-limiting condition’, a term consistent with the National Policy on Palliative Care for Children with Life-Limiting Conditions, and also notes that the term parents prefer should not impact on bereavement care.
Most importantly, the standards set out that bereavement care must be an integral part of Ireland’s maternity services, and stress the important role that healthcare professionals play in providing a caring and compassionate response to parents.
The guidelines emphasise the need for sensitive and accurate communication, and state that written information must be made available regarding the condition affecting the baby. Where a baby has been diagnosed with a life-limiting condition, the guidelines state the Bereavement Support Team will assist parents in making the most of time with their baby before birth; will discuss memory-making; talk through sibling involvement in accordance with parents’ wishes; make arrangements for counselling and support; make a birth plan; and more.
The announcement that additional funding will be made available to recruit badly-needed bereavement specialist teams for maternity hospitals and units is also very welcome.
The HSE team who worked on the standards gave a great deal of time to listening to parents whose babies had died, and to suggestions for improvements.
Their kindness and consideration is to be commended, and these standards are an important step in ensuring that full perinatal hospice care is made available in all maternity units in the country.
Because language is so important, it is hugely significant to families that the Health Service Executive decided to make use of the correct terminology and, throughout the Standards, described babies as having a life-limiting condition rather than being a ‘fatal abnormality’.
That some media commentators publicly opposed parents in this matter is almost incredible. It seems that the distress and, even worse, the misinformation caused by the use of these terms is irrelevant to those who want to misuse language to liberalise abortion laws.
It would be inspirational if a fraction of that time and energy was given to working towards better supports and care for parents whose babies are very sick and may not live for long after birth.
Our children’s lives may be limited by a devastating medical condition, but they are not ‘fatal abnormalities’ – they are children whose lives have value, and who are compatible with love.
Tracy Harkin is a spokesperson for Every Life Counts. Her daughter Kathleen Rose is living with Trisomy 13.