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Friday 19 July 2019

'They are cruel' - mother hits out at conditions of hospital her son is spending final days in

Ralph Riegel

A mother whose seven year old son is in palliative care has hit out at the cruel conditions she said he is being asked to spend his final days in.

Helena Murray said her son, Jamie (7), who is deaf, blind and has an inoperable brain cyst, is being cared for in a Cork hospital ward without air conditioning, special shower facilities or even a hoist to allow the boy to be removed from his bed.

"We are not oblivious to the fact that he doesn't have long to live. When it's his time he'll go. It is very sad - we have two other children and it is very hard," she told Cork's Red FM.

"It is so hard knowing that he will not have a future.

"It is not an easy thing to come to terms with but we have. Obviously it will be hard when it happens."

Last week, the family signed a 'do not resuscitate' order for their son.

The Fermoy mother said all they want is for Jamie's final weeks to be made as comfortable as possible.

"It is very hard," she said.

"He is in and out of Cork University Hospital (CUH) all the time.

"They are cruel (conditions). The nurses and doctors here are amazing. But we are on the fifth floor, there is no air conditioning here, we have no wheelchair facilities, there is nowhere for a child....there is no shower trolley for him.

"We have had to bed bathe him for the past 15 days. He is now getting bed sores from it."

Helena said Jamie is in a temporary ward - and she said four other children with severe health issues are in the same ward.

"It is horrendous. The day ward has been opened but the children's in-patient ward is still on the fifth floor.

"The heat up here is cruel.

"It is physically and emotionally very straining - on everything. They definitely need an area where children can have showers - and there is no hoist facility on the ward.

"There is no air conditioning. I have to sit here in my shorts and T shirt because it is roasting here.

"I wanted to highlight that we are four years up on the fifth floor. The staff are amazing here - they go beyond and above for you.

"The staff have to work with these conditions too - and it is so unfair."

Helena said Jamie had fought for life every day for the past seven and a half years.

"I was told at 16 weeks that he would probably not breathe when he was born. But he is such a strong little boy.

"He is doing well now after spending 15 days in hospital with a collapsed lung," she said.

"He had the flu and a major infection - he is slowly coming along but last Wednesday we were told it might be the way his brain is shutting down.

"He was born with this condition where he has a cyst on the brain and it is not operable. It is part of his brain and it is life limiting.

"All his life he has been in hospital.

"He is a little fighter," she said as she acknowledged that Jamie has had little or no quality of life.

Jamie has severe scoliosis as well.

"He knows by touch or feel that we are here. He gives us the odd smile now and then. Thankfully he is not in any pain.

"It will come to a time when he has had enough - we thought that was last Wednesday.

"But he fought back."

Helena said she believes her little boy "has had enough (suffering).

"It is not fair but that is life."

Cork University Hospital was contacted for comment.

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