'The paramedics told me my son wasn't old enough to have a stroke'

It strikes three children every day, and doctors often fail to recognise stroke in the young. Liz Bestic reports

Kray Mundy was just like any other healthy 12-year-old. He was football crazy and liked nothing better than a kick about at the local recreation ground. So last year when he returned from playing with his friends, his mother, Soniya, had no reason to suspect anything was wrong. But during the night Kray suffered a massive stroke and lost all feeling down one side of his body. Had Soniya not recognised the signs, Kray may not have got the lifesaving help he needed.

"Our two-year-old, Harry, came into our bedroom at about 5am. He kept calling out Kray's name and was clearly very agitated. I rushed to the bedroom where they both sleep and just took one look at Kray and knew immediately he had had a stroke. Even though he was so young he looked just like my nan when she had her stroke. His face had dropped on one side, he was drooling and he had lost all feeling in the left of his body. He tried to talk but the words came out all wrong; then he started to vomit."

We placed Kray in the recovery position and called an ambulance. When the paramedics arrived they were insistent it could not be a stroke because Kray was far too young. They thought it was more likely to be a trapped nerve in Kray's neck or that he had fallen out of bed and hurt himself. I kept shouting at them, 'He's had a stroke – get him to hospital!' He was rushed to the Bristol Children's Hospital where they immediately did an emergency CAT scan. Once they got the results the doctors took me into a side room and explained that Kray had had a stroke caused by a blood clot on the brain."

Kray was then moved to the nearby Frenchay Hospital so he could be seen by a brain specialist. "His vision had gone completely and he couldn't speak – all he could do was put up his right hand thumb to tell me he was OK. He kept trying to talk and mouthing, 'I love you, Mum'. It was devastating. Then all of a sudden he stopped responding to me and from that moment on it was panic stations. Kray had had another brain haemorrhage and was rushed off to theatre. All the anaesthetist said to me was, 'Give your baby a kiss goodbye.' It felt like my whole world had collapsed around me," says Soniya.

Kray underwent emergency surgery and the doctors discovered he had an Arterial Venous Malformation – an abnormal cluster of blood vessels and arteries in the brain. They couldn't touch the blood clot or the AVM because it was deep down in the brain. Kray was given an extravascular drain to relieve the pressure on his brain but then began to deteriorate rapidly. His only chance of survival was to have open brain surgery. "We spent the whole night in total shock, not knowing whether Kray would pull through."

Kray was in surgery for eight hours as doctors worked all night to remove the AVM. He survived, but once again started to go downhill. "He was in terrible pain because his brain had started to swell again. The only option was to induce a coma and for that they moved him back to the Children's Hospital. Three days later when they woke him up it was like a miracle. My boy came back to me and smiled and said, 'I love you, Mum'. His vision returned and he could walk but he had lost all sensation in his left-hand side. When he was wheeled through the corridors at Frenchay all the staff were lined up clapping. None of them thought that Kray would be coming back."

Kray was very lucky that his mother recognised the symptoms because most people – parents and doctors alike – have no idea that children have strokes. A three-year study at Bristol University called The Study of Childhood Stroke (Socs), which involves neurologists, physiotherapists and radiologists, has been tracking every child in the South of England who has had a stroke. The aim is to discover why children have them and what treatment they currently get.

Dr Finbar O'Callaghan is consultant paediatric neurologist at Bristol Royal Hospital for Sick Children and lead researcher on Socs. He believes there is a striking lack of public and medical awareness of childhood strokes, which means that often children do not get the appropriate treatment because they are diagnosed way too late. "Our figures show that up to three children a day have a stroke in the UK. It is at least as common as childhood brain tumour and possibly as common as childhood cancer," he explains.

Strokes not only occur during childhood but can even happen in the womb. "It is not uncommon for an MRI scan to reveal evidence that children with cerebral palsy have had a stroke in the past. These children have no apparent history of having had a stroke after they were born so it is likely that it occurred either in the womb or shortly after birth. Just as we know strokes are often caused by an infection such as chickenpox in children, we now believe that in utero strokes may be caused by an infection in the mother," he says.

Very little is known about the longer-term outcomes of childhood stroke. "The purpose of our research study is to describe those outcomes in some detail. So we will not only be looking at how the child is able to walk and use their hands but at more subtle problems such as cognitive function like verbal ability, memory, quality of life and the degree to which the child can participate in everyday life. This hopefully will mean parents will get the support they need to access the appropriate services," says Dr O'Callaghan.

Soniya has had to find out the hard way just how little help there is out there for parents of children who have had a stroke. "Once Kray left hospital we felt as if we'd been dumped. At first he got occupational therapy and physiotherapy. That soon dwindled. It was a terrible blow for Kray because these therapies gave him a goal to work towards," says Soniya. "As a family our world had been turned upside down and we felt we had nowhere to turn for help. I have asked for counsellors but there is no support out there because stroke is still perceived as something that happens to older people," she explains.

Soniya suffered a breakdown as a result of what happened to her son. In spite of this setback, however, she decided she had to get better to fight for help for Kray. "I wanted something positive to come out of this, so I set up a website for other parents in the same situation. Within hours of the website going live I had three members," she says. "To date we have more than 65 members. At first the mums who joined were mainly from the States, where childhood stroke is well recognised. Then one popped up from Barnstaple in England and I was so excited. We have put together an online petition to urge the Government to provide better support and services for families affected by childhood stroke."

Childhood stroke: The facts

* In children the causes of stroke and recovery after stroke may be different from those of older people.

* Up to half of all childhood strokes are caused by a bleed in the brain. A bleed can happen when blood vessels in the brain burst or can be caused by a brain infection, prolonged low blood pressure or a head injury.

* The other main cause of childhood strokes is a blockage in a blood vessel. This is known as an ischaemic stroke. In children this can be the result of congenital heart disease, major heart surgery or a brain tumour. Research is beginning to show that chickenpox may also be a cause of this type of stroke in children.

* A child who has had a stroke faces some of the same problems as an older person, although recovery tends to be better in children. The brain is a very flexible part of the body and the developing brain in a child has even greater potential for change.

For more information about childhood stroke go to www.stroke.org.uk or www.differentstrokes.co.uk. To contact Soniya Mundy's website go to www.childstrokesupport.ning.com