'Our daughter would have been diagnosed as having fatal foetal abnormality, yet this special soul has made us far better parents and better people'
In a heartfelt account of what it's like to have a severely disabled child, Lisburn mum-of-eight Tracy Harkin says her daughter Kathleen Rose has profoundly enriched her life. If other parents were offered better support, they wouldn't consider abortion, the 43-year-old argues.
My daughter Kathleen Rose was born at 6.15am on November 2, 2006, and weighed in at 6lb 7oz. I will always remember the beautiful feel of her soft silky skin next to mine as I cradled her in my arms for the very first time.
My husband Tom and I had a wonderful first hour together with our new baby girl relieved that she had arrived safe and well.
Two hours later, however, despite my best efforts she still hadn't fed. Doctors came and went, yet no one seemed in any panic. I remember thinking that, 'maybe it's an infection or she's still just tired from the birth'.
We had been told at our 20-week scan that everything was fine, so what on earth could be wrong? As I reached over to pick her up again I screamed in horror as a blue colour was visibly moving across her little body.
Doctors came out of nowhere, racing down the corridor with her towards the neonatal unit, and all we could do was follow.
The days that followed were a whirlwind of endless tests. The results came back in quick succession each one more depressing than the last.
It seemed every part of Kathleen's little body was imperfect in some way.
Within a week the geneticist had diagnosed her with the chromosomal anomaly Trisomy 13 or Pateau Syndrome. We were told her future was bleak. She would be mentally and physically handicapped and would probably not live to see her first birthday.
If diagnosed before birth, she would have been labelled with those ugly, dehumanising words, 'fatal foetal abnormality' or 'incompatible with life'. Now two weeks after birth, and still alive and kicking, she was described as life-limited.
Despite this devastating diagnosis we continued to insist that Kathleen be given appropriate medical intervention and every opportunity to reach her full potential whatever that may be.
Six weeks later, following surgery to address her reflux and insert a feeding tube, we welcomed our beautiful baby home to Lisburn to the love and care of her family - her dad Tom, now 46 and her siblings, Luisa (18), Bernadette (17), Anna (14), Tomas (12), Dominic (7), Gabriella (5) and Nathan (2). For the first year Kathleen Rose did amazingly well. She was a tranquil baby who was responding well to us and making mighty attempts to crawl. She and her feed pump came everywhere with us. It was our new normal.
It was a happy first year. At one-year-old, a sleep study revealed she had 'severe obstructive sleep apnoea' meaning she would stop breathing many times throughout the night. She also began to get a series of chest infections requiring IV antibiotics.
Kathleen continued to surprise us, however, and each time responded well to standard treatment, and was back home and on the mend again within a week.
Today Kathleen Rose is a beautiful nine-year-old little girl who attends our local special school and is known most for her mischievous laughter and enormous hugs.
She enjoys the rough and tumble of family life and loves interacting with her brothers and sisters. Her health is fragile, of course, but I am fortunate to have a great team of community nurses and a dedicated GP that are only a phone call away.
I thank God for the gift of time I have had with this special child who has defied all medical expectations. She has taught me much about what's truly important in life and challenged me to grow in ways unthinkable before she came into my life. But it also saddens me to think that for some legislators and campaigners, children like Kathleen Rose have less of a right to life than children without a disability.
In recent years I have been privileged to have met and heard the stories of other families whose babies have been diagnosed with life-limiting conditions such as Trisomy 13 or anencephaly.
The support network, Every Life Counts, has become an important online forum for us to share our stories, network with other parents, and seek vital help and support.
What unites us as parents is the belief that all our children - whether their lives spanned hours, months or years - deserve the best care possible before and after birth, and parents deserve accurate information and world-class care to get them through this difficult time.
This care is called perinatal palliative care and it is a beautiful and practical response to one of the most heart-breaking challenges a parent faces. It means continuity of care so women see the same medical team.
It means providing up to date factual information so parents are properly informed about their child's condition, and understand their baby is not suffering and will be cared for after birth. It's about providing bereavement midwives and counsellors, and ensuring the necessary medical support is provided throughout the pregnancy and at birth.
When baby is born, the family has its own room. A specialist photographer, such as those who work with 'Now I Lay Me Down to Sleep', can be arranged, as well as a chaplain if that is desired. Handprints and footprints can be taken and family and friends allowed to visit and share in these special moments if parents wish.
This care gives parents the gift of time with their baby, and when you've been told your child may not live for long, time is all-important.
As one mother so poignantly and powerfully told me: "You learn to pour a lifetime of love into those hours or days."
This type of care also includes using factual information. Incorrect terms and ugly labels like 'fatal foetal abnormality' and 'incompatible with life' only serve to add to the confusion and upset of parents. After a major review, the HSE in the Republic of Ireland recently decided that the term 'life-limiting condition' was the most accurate term to be used in its revised Standards in Bereavement Care.
And recently, I was very glad to see Professor Jim Dornan say that the Royal College of Obstetricians and Gynaecologists had sent a submission pointing out that 'fatal foetal abnormality' was not a medical term.
No child should be called a 'fatal abnormality'. These terms are misleading, medically meaningless and incredibly hurtful for parents to hear. They instil fear into the heart of parents when they are at their most vulnerable. I believe that all children with profound disabilities are precious jewels within our world because they give love in abundance.
We become better parents, more loving people and richer communities by having these souls in our midst. We need to wrap our arms around these families and give them and their babies the love and support they deserve.
Whether our babies' lives span just minutes, days or years like my Kathleen Rose, their lives have value and meaning and they can teach us how to love.
Right now, we are hearing campaigners and some politicians say that parents of babies like my Kathleen Rose should be given a 'choice' to abort. What is not often discussed is the reality of that choice and what the procedure entails... it is a dreadful prospect.
We can do better for families. Abortion is not a shortcut through grief. It is important that recent research in this field be given due consideration, not least a recent study published in Prenatal Diagnoses (2015) by Cope et al which showed that women who aborted after a diagnosis of anencephaly were significantly more likely to suffer depression and despair. This is in stark contrast to the experience of parents who carried their baby to term with a life-limiting condition, and who described the experience as enriching and rewarding, especially where good perinatal hospice care was provided.
In the UK, when it comes to babies diagnosed with a disability, 'choice' has become an expectation to terminate, to the point where 90% of babies diagnosed in the womb with Downs syndrome are aborted. In Iceland, this figure is a truly chilling and heart-breaking 100%.
Here in Northern Ireland, we need an informed debate, one which is honest and transparent in regard to all these realities. Providing good standardised care which empowers parents to have time with their very sick babies, would bring real progress and compassion to our response to these heart breaking situations. Kathleen Rose, above all else, has taught me that every life counts, and that we can only bringing healing and hope when we act to help parents let love shine through."
- Every Life Counts is a network of families, who, having received a diagnosis of a life-limiting condition for their child, support each other through pregnancy and beyond. Every Life Counts aims to be a valuable resource and source of hope for families and their children who, above all else, seek the gift of time.