Galway family shine a light on reality of coping with critical illness

A Galway family have told of how they coped with the heartbreak of discovering that their new-born baby boy was fighting for his life – and how the new four years were to be a rollercoaster as he waited for the transplant that would give him a fighting chance.

Bernard Óg Keaney was only a few minutes old when doctors realised how seriously ill this brave little boy was. He was immediately rushed from his native Galway to Dublin for life-saving surgery – a journey that they couldn’t have known would become such a part of their lives over the following years.

Bernard Óg and his parents Marieann and Bernard Keaney, from Roundstone, have told their story to show how they relied on the skills and dedication of the team at Temple Street Children’s Hospital.

It’s the final part of a series of videos the hospital has produced, called Living Proof which tells the real-life stories of little patients and their families, who have benefitted from public support and donations.

Bernard Óg’s mum, Marieann, will never forget the day her tiny baby son was taken from her and rushed to Intensive Care.

“You are just so scared. Especially when you see him going off and you are not allowed to go in the ambulance with him. And you are told to take a picture. You think ‘God, will we make it up to Dublin at all like to see him?” she recalls.

But Bernard Óg’s incredible journey was only beginning – and what an extraordinary journey it has been.

A few days after he was born, mum Marieann and dad Bernard were told that their infant son was in renal failure. His kidneys were shutting down.

Temple Street Hospital is now the centre for renal dialysis for the entire country – and for the next few years, it would become Bernard Óg’s home away from home.

At first, the baby boy was put on home dialysis where, for ten or eleven hours a night, seven nights a week, his devoted parents supervised his treatment.

Bernard Óg and his family live outside Roundstone – so they had to travel nearly 300 kilometres to Temple Street where the expert renal team could monitor his devolvement.

As Bernard Óg grew older he began to need regular blood dialysis in Temple Street.

“We would get up around 2am to start him on his fluids. And then we’d get up again around 3.30 or 4am and would hit the road to arrive in Temple Street for 8 o’clock. Bernard Óg would be on the machine for about three hours and then we’d be back on the road again to go home,” recalls Marieann.

The Keaneys continued that gruelling routine three or four times a week for nearly four years, as Bernard Óg came to rely on the dedication and expertise of the medical teams who lovingly cared for him and his exhausted parents.

“The care is second to none in Temple Street. They are just amazing. Each and every one of them. They are like our home away from home,” says Bernard, Bernard Óg’s dad.

The Keaneys knew that their boy would eventually need a kidney transplant to survive. So, they waited patiently for a donor to become available.

At one point, Marieann thought that she might be able to provide her son with the transplant he needed to save his life.

“I got all the workup done and they told me I was all ready to give him the kidney. But then I got a phone call – I’ll never forget it – and they said ‘we can’t take your kidney’. I was devastated,” she says.

So, Bernard Óg remained on the transplant list – always hoping, always praying that a life-saving kidney may become available.

And then, late one Friday night, they got the call they had been waiting for. Thanks to the kindness of another organ donor, Bernard Óg’s was told that there was a kidney waiting for him.

“I was an emotional wreck, I was up and down the hallway crying and you’d be thinking of the other family, what they are going through. Every emotion runs through your head,” says Marieann.

After all those years, and all those miles, Bernard Óg’s transplant was a success and today he and his family can look forward to the future with hope and confidence.

Chief Executive of Temple Street Foundation, Denise Fitzgerald said they were immensely grateful to Bernard and his family for sharing their story.

“Their experience highlights the tremendous impact that your support has on Temple Street and the children in its care,” she said.

“This festive season, you can support our doctors and nurses in their vital, life-saving work by helping to fund the essential paediatric equipment that will help so many children just like Bernard,” she added.

The Keaneys readily admit they will never forget the people they met or the care they received in Temple Street. And they will always remember the incredible generosity of Temple Street’s wonderful family of donors who helped to fund so much essential equipment – like the dialysis machine that kept Bernard Óg alive for so long.

Bernard Óg will clearly never forget either. When asked what he wants to be when he grows up, the answer is clear.

“A doctor,” he says.

To support Temple Street this Christmas, visit www.templestreet.ie/donate.