'We were scared and struggled to cope with my son Sean's brain injury until a charity gave us a lifeline'
The mother of a little boy who suffered a cardiac arrest when he was just six years old has spoken of her struggle to cope in the aftermath with his brain injury.
Orlagh Deighan's son Sean spent several traumatic weeks in intensive care at the Royal Victoria Hospital, but after being fitted with an Implantable Cardioverter Defibrillator and a pacemaker he was allowed home to Claudy.
However, once home the family struggled to get information and help to care for Sean, whose physical and mental health had changed beyond recognition.
"While he is a wee miracle, the downside was that there was literally no help available to us when we brought Sean home because no child had survived what he went through before.
"It is two years exactly since Sean collapsed. These have been a struggle for us but I want other families to understand what we went through and to know that there is help for them."
Orlagh was out shopping on April 9, 2015 when Sean's dad phoned her, screaming that Sean was dead.
"I drove as fast as was humanly possible to get there but when I looked at Sean, he was blue in colour and I just thought he was gone," said Orlagh.
"I started CPR and was shouting at Sean, 'Don't leave me Sean, please don't leave me.'
"I kept going until the rapid response unit arrived. They eventually got a very weak pulse but it was enough so that they could get him to hospital. We really had little hope of Sean surviving but, against all the odds, he started to recover slowly. He was fitted with a defibrillator and a pacemaker and a few days later we were told we could take him home."
But things were not the same.
"At home, Sean was extremely anxious, he was in a terrified state all the time, scared he was going to die and we were just as scared.
"We also noticed him doing things that made us wonder if he hadn't recovered as well as we thought. He would do things like put his shoes in the fridge, once he tried to put them in a pot that was on the stove.
"He seemed unable to retain information and one time he was in the middle of the road totally confused and too scared to move."
The family struggled to cope and Sean's grandmother contacted the Cormac McAnallen Trust - a charity set up in memory of a young GAA player who died suddenly. It suggested they contact Brain Injury Matters in Belfast.
Orlagh said: "Within 24 hours of contacting Brain Injury Matters in Belfast, they had not only come to our house to see Sean, they were able to tell us he had a brain injury and that they could help. I cannot relate how this made us feel. Here was help for us for the first time.
"It was the lifeline we needed and for the past year the improvement in Sean's anxiety levels and his ability to retain information is incredible. We know the future for Sean is still filled with uncertainties but at least it is so much brighter than before.
"I've often wondered over the past two years if there are other families like ours who feel alone and scared but who would benefit so much from the help that Brain Injury Matters can give. We can't be the only family, so I hope that this will give hope to others and let them know they are not on their own."