Last Wednesday evening I watched with joy as my 10 year-old daughter Kathleen Rose sat smiling on stage during her school’s concert at Belfast’s waterfront. If you had asked me some years ago which of my children would be least likely to be on stage in this prestigious location, I would definitely have said Kathleen Rose. You see Kathleen like all the other children performing that night is a pupil of a very special school in my local town. A wonderful school that caters for children with profound learning difficulties. Music is an integral part of the school curriculum and Kathleen like all the other children absolutely loves it. The eagerness and excitement of the pupils to showcase their talents on stage that night was palpable. This was truly an extraordinary celebration not only of music but also of children with very obvious imperfections being given the dignity, respect and opportunity to reach their full potential that they deserve. To see my daughter Kathleen on stage at the waterfront was a deeply moving and unforgettable experience for me and my family.
Over 10 years ago my husband Tom and I received the very shocking and unexpected news that our baby girl had been diagnosed with Trisomy 13. A rare Chromosomal condition that effects 1 in 10,000 children. We were told that she would be severely mentally and physically handicapped and would probably not live to see her first birthday. Despite this heart-breaking prognosis we insisted that she be given every opportunity to reach her full potential whatever that may be. After six weeks of hospital care we were delighted to take her home to the
love and care of her family. Despite the ups and downs of those early years Kathleen has went on to defy all medical expectations. At 10 years of age she is an absolutely cheeky and adorable wee character who is very much the heart of our home.
Parents are never more vulnerable when told that their unborn child, has a condition such as Trisomy 13,18 or anencephaly. These are conditions which mean their child growing and kicking within the womb will likely have a very short life or perhaps not make it to birth at all. Over the years It has been a tremendous privilege for me to have met many of these parents and heard their stories. They are truly inspiring.
I am glad to see there is a growing willingness among health professionals to listen to these parents and the huge benefits of perinatal hospice and palliative care for families who find themselves in this very difficult position. But much more needs to be done. This compassionate and progressive model of care needs to be rolled out with urgency in maternity hospitals throughout Northern Ireland This care includes a specialist team who will provide accurate up to date information on their child’s condition, counselling and support during and after pregnancy and linking parents to specialist support services available. This care is not expensive to provide. When the baby is born their parents can have their own room with a specialist photographer, chaplain and other family members present if that is desired. They can make handprints, footprints and make
memories which help sustain them after their child’s passing. This pathway of perinatal care gives parents the gift of time with their children in a loving supportive environment. When you are told you may not have long time is all important. As one parent so powerfully and poignantly told me, ‘you learn to pour a lifetime of love into those hours or days.’
This compassionate care must include the use of language to describe our children that is accurate and humane. It has been deeply upsetting for me and parents throughout Northern Ireland to hear children like ours repeatedly described media discussion as a ‘Fatal Fetal abnormality’” The term “Fatal Fetal Abnormality” is not a medical term and it has no definition in law. Hundreds of doctors have signed the Geneva Declaration on Perinatal Care calling for an end to this misleading label. Last December, Prof Jim Dornan also told the BBC that the phrase has no medical meaning. The Northern Ireland Committee of the Royal College of Obstetricians and Gynaecologists (RCOG) has already stated that they were unhappy with this term.
Most of these babies do live beyond birth if only for a very short time – and this time means everything to parents. Some, like Kathleen Rose, at 10 go on to defy all expectations. In a recent 2012 study published in the BMJ Doctors recommended this term should not be used in counselling. “In the Republic of Ireland, following an extensive consultation with parents, the Health Service Executive has issued new guidelines which use the correct term ‘life-limiting
conditions.’ This is because the medical literature and the lived experience of doctors and parents point to the fact that this label is utterly misleading and dangerous as it can prevents best care before and after birth. In fact, this language can actually push parents towards abortion.
Like many parents, I am weary of the continued misinformation and the repeated use of this misleading and discriminatory label. In an age where we expect our commentators to be cognisant of harmful language and of the rights of people with disabilities, it is hard to make sense of the decision to continually use this this discriminatory and misleading phrase.
Our children may have profound disabilities, their lives may be all too short, but they are sons and daughters, grandchildren, brothers and sisters, they are members of our human family, and many of us have faced this situation are tired of campaigners who want to liberalise the law using our loss and our pain to push their own agenda and persist in using offensive labels which serve to dismiss of the value of our babies’ lives. It would be inspiring to see those within positions of influence come up to speed with progressive developments in caring for these babies and give even a fraction of this time and energy to pushing for perinatal hospice care and really helping families who are told their babies may not live for long after birth”.
Every parent wants a healthy child, but how we care and support parents and their babies who find themselves in this heart-breaking situation defines us as a culture.
Here in Northern Ireland we need to pay close attention to the chilling effect that withdrawing legal protection from disabled unborn babies has had in other countries. For example, Iceland no child with Downs syndrome has been born in the last three years and in England and Wales over 90% of babies with Downs syndrome are aborted. In Great Britain, abortion on the grounds of disability is allowed right up to birth.
I believe children like Kathleen are such precious jewels within our society because they give love in abundance and they teach us how to love. Last Wednesday evening as those children from Knocleven special school performed at the waterfront with such innocence, excitement and joy I was more convinced than ever that We become better parents, more loving people and richer communities by having these pure souls in our mist.
It is my hope that here in Northern Ireland we will continue in law and practice to recognise the immense dignity and value of every member of our human family regardless of life expectancy, ability or disability. It is my hope that the lives of children like my daughter Kathleen Rose and all disabled children will be protected and that parents will be given every opportunity and support to help
their children reach their full potential as valued members of our families and communities.