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Joey’s story: “Sheffield Children’s has saved his life”

Joey smiling at the camera
04 May 2022

This is Joey – he was one of the winners in our competition to name a Sheffield Children’s robodog!

Twelve-year-old Joey loves football, computer games and watching the Sheffield Steelers ice hockey team play. He chose to name Ward 5’s robodog ‘Kevin’, in tribute to the Play Specialist who visits him when he’s an inpatient on our dedicated neurosciences ward.

At three years old, Joey was diagnosed with Chiari malformation type 1. This means that part of the back of his brain extends into his spinal canal. This can put pressure on the brainstem and spinal cord, and cause hydrocephalus – a build-up of fluid on the brain.

Aged four, Joey came to Sheffield Children’s for his first major operation, called decompression surgery. During the surgery a small piece of bone was removed from the base of his skull, and another was removed from the top of his spine, to try and relieve some of the pressure. Joey has since had more operations and lumbar punctures (a thin needle which is inserted between the bones in his lower spine) to release trapped fluid.

Joey has also had intracranial pressure (ICP) monitoring to measure the pressure inside his head.

Joey currently has a ventriculoperitoneal shunt fitted. This is a thin rubber tube which goes from his brain to his tummy to drain fluid, which is then absorbed into his blood. Inside the shunt there is a valve which allows it to open and close depending on whether he is sitting upright or lying down. This helps to make sure that there isn’t too much, or too little, fluid being released. Joey visits hydrocephalus nurses at Sheffield Children’s, Jan and Liz, who use a magnet to change the valve’s pressure settings.

Joey’s mum, Claire, said: “Sheffield Children’s has saved Joey’s life – he could have died. I can’t fault any of Joey’s care. There are times where we have to come every week or fortnight, so it’s great that we have the hospital on our doorstep.

“Nothing is ever too much trouble – even if I ring up at 8pm. Everyone at Sheffield Children’s goes above and beyond.”

One of those people is Play Specialist, Kevin. Claire said: “He has always been there when we stay on Ward 5, doing magic and being silly! Anything you ask for he will get, and he has been there to distract Joey in theatre when he has to have wires removed from his head without sedation. If he sees us in Outpatients, he will always come over to say hello. Kevin has been a big part of Joey’s care.”

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