I’m Ciara Barry and I’m a Senior Staff Nurse here at Northern Ireland Children’s Hospice. I’ve worked here since I qualified as a nurse back in 2012. Often, when I tell people I work at the Children’s Hospice, the (well-meaning) reaction I get is ‘Oh, that must be so awfully sad!’
In fact, it’s a wonderful, fulfilling and rewarding place to be a nurse. Because, when we care for a child, we enable such precious moments and truly unique experiences that simply can’t be offered anywhere else.
Every child we care for has a life-threatening illness. So, our nursing is about keeping the child comfortable, taking care of the medical side of things and, ultimately, supporting the whole family – so the children can just be children; Mum and Dad can just be Mum and Dad.
We look after children of all ages and many of them we will know for years, and be a part of their lives as they grow and develop. But, increasingly, we are caring for very, very young children whose conditions are so severe that their lives can only be counted in days. For these babies, and for their parents and siblings, our care becomes absolutely vital.
One such baby was little Jamie, who came to us last year. His mum Lorraine has very kindly written about her experience and allowed me to send you her words – I encourage you to read it.
Jamie had Edward’s Syndrome, which is a chromosome defect that gave the little boy no hope of life beyond a few weeks. He was at the Hospice for five days and throughout his stay he had a dedicated nurse, just for him, looking after his needs all the time – I was privileged to be one of his nurses.
Our hope and ambition, as with every baby, was to keep Jamie free from discomfort and pain, and allow him to be the baby within his family for whatever time he had. We’ve come to know well the little signs that babies like him give out when they’re in distress. Every baby is unique and we often say that the baby will decide for themselves how they need to be cared for. Therefore, caring effectively for little ones like Jamie only comes through experience – and no one has greater experience than our nursing team.
But, we weren’t just here for Jamie. He was the smallest of five young boys and it was really important that they were able to spend time with their wee brother. We played with them, kept them busy and entertained – and that allowed Mum and Dad some space to spend precious time with their new-born son too.
No one would ever wish the sadness and pain of losing a child on a parent. But, when a child is at the end of their life, we work hard to make the short time they have together as positive as it possibly can be.
And, one of the lovely things we can do for a family who has lost a child is to create memory pieces. This is what we did for Jamie’s family, so they could keep and treasure mementos as a reminder of their time with their little boy. I studied Art at university before I came to nursing, and I always try to spend time with each family like Jamie’s, helping to create artwork that’s unique and special to them.
For Jamie, we created a very special image – we made colourful footprints of each of the five boys and turned them into Power Rangers. Lorraine’s kindly shared a copy with you and, as you’ll see, goes on to tell you about this image and what it means to her boys. It also means such a great deal to us nurses to know just how much we were able to help that lovely family.
How you can help
There are more and more babies like Jamie coming to us – and that’s why I’m writing to ask for your help today. The one-on-one dedicated care they need takes a lot of our nursing resource to provide; so, we’re reliant on the support of folk like you to pay for that care.
£30 can pay for one hour of nursing time in a family’s home
£81 can pay for two whole hours’ complete care for a child at the Hospice
£243 can pay for six hours’ complete care at Northern Ireland Children’s Hospice for a baby like Jamie
That’s what it takes to give little ones like him the care they need – and the chance to create memories for a family that will last a lifetime. If you can help today, we’ll be able to support another family tomorrow.
I’m back to my day job now, there are kids needing me. On behalf of the whole nursing team, thanks so much in advance for your wonderful support. It means a lot to all of us here.
Have a lovely summer,
Senior Staff Nurse