Stroke: Bethany, part 1

Bethany Sinfield suffered a stroke at 17 when she was studying for her A-Levels. Now 19, she explains how it resulted in catastrophic brain injury and how doctors need to be more accepting that stroke can affect younger people.

Published: July 2015. Date of brain injury: 2012 (child aged 17 years).
Bethany lives in Leighton Buzzard, Bedfordshire, with her parents and sister. This is her account: "I was really panicking, my head was throbbing and I was losing all feeling down the left side of my body; the left side of my face was noticeably drooping," says Bethany. "I didn't know what was happening to me. I was terrified." Bethany's mum, Christine, called an ambulance which arrived 15 minutes later but by this stage Bethany was unable to walk or talk. "As I was carried into the ambulance I vomited and the paramedics started asking me whether I'd been taking drugs. "There was an assumption that because I was a teenager my problems must be drug or alcohol-related but I've never taken drugs," says Bethany.

Baffled by symptoms

At A&E, doctors appeared baffled by Bethany's symptoms and suspected meningitis, an infection of the protective lining of the brain and spinal cord. They ordered a lumbar puncture to get a sample of her spinal fluid but the results were negative. "Despite my slurred speech and paralysis they did no tests for stroke, where either a blood clot or bleeding caused by a leaking blood vessel restricts blood flow to the brain," she says. "Crucially I was not given an MRI scan, the only test that can confirm a diagnosis of stroke. "I was kept in overnight and fell unconscious. When I awoke the next morning I was completely paralysed and couldn't speak at all. I cried my eyes out; I’d never felt so powerless."

Locked in

Bethany was eventually seen by a neurologist who diagnosed a suspected stroke and arranged for her to be transferred to Addenbrooke's Hospital in Cambridge later in the day. "The MRI scan confirmed I'd suffered a stroke in my brain stem caused by a blood clot, called an ischaemic stroke, the most common sort. "By this stage however it was too late for me to have thrombolysis, the clot-busting drug treatment that might have dispersed the clot and prevented the brain damage I suffered." Bethany was left "locked in" for the next week unable to speak or move. "It was nightmarish. I could hear people talking about me and my condition but had no way of letting them know that inside my brain I was fine, it was just my body that wouldn't do what I wanted it to," recalls Bethany.

Defying expectations

"It took me four months before I could communicate with anyone after speech therapy at London's Northwick Park Hospital. "I wasn't expected ever to fully recover. I was in hospital for ten months in total. “I always had an image in my mind of walking and talking again, just hanging with my friends like normal, so I focused on that and wasn’t settling for anything less – I was quite stubborn!” (» Daisy suffered a brain injury from a stroke when she only 21 months old. Read her story here.)

Regaining movement & relaxing muscles

At first, physiotherapists focused on helping Bethany regain movement in her head and neck while working on relaxing her arm and leg muscles, which had become stiff from lying in bed. Secondly, they worked on her walking. She spent eight months at Northwick Park Hospital’s regional rehabilitation unit, received daily physiotherapy and was given exercises to do in bed each night with the help of her family. “It’s funny, it seems like physiotherapy has now become an essential part of my life,” she says. “If I don’t have it I feel like I just haven’t tried to get better or I feel my dream of walking completely unaided is further away or harder to achieve.” Bethany says learning to stand and taking tentative first steps were big achievements but most recently has been able to take part in fundraising runs. “My confidence is probably the hardest part to ever gain back. I’m still not fully confident but the physiotherapy is definitely helping this. As my legs get stronger my confidence grows,” she says.

Calling for more child and teen stroke awareness

Bethany's recovery has been a two-and-a-half-year battle but she can now walk and talk again and is returning to college to complete her A-levels in the autumn. "If my symptoms had been recognised sooner and treated with clot-busting drugs I might not have suffered such catastrophic brain damage and avoided all I've been through," She says. "Medics shouldn't just assume slurred speech in young people is down to drugs or booze." Dr Andrew Mallick, a specialist registrar in neurology at the University of Bristol and a member of the Stroke Association's Child Stroke Advisory Committee, says Bethany's case is unfortunately not a one-off: "It's definitely true that there is still delay in diagnosing stroke in children and young people. For instance, in our study of strokes in children aged one month to 16 years old, the majority of the delay was when the children got to hospital. "Until recently the protocol for some ambulance crews was to exclude stroke in children and young people who had been taken ill. This is extraordinary given that stroke is in the top 10 causes of death in children, although I've been assured this guidance has now been updated. "The symptoms of a stroke, facial weakness, weakness in the arms and speech difficulties are very similar in young people and children to those in adults, although the very youngest children frequently have seizures.
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