‘I didn’t think children could have a stroke’
Claire Redfern tells Giulia Rhodes it’s been a constant battle for help, nine years after her daughter suffered a clot on the brain
Maddie Greenwood’s world is filled with music, fashion and friends. A keen swimmer and rider, she loves taking pictures on her phone. Her mother Claire Redfern admits “she can have a bit of a temper”. She is – if such a thing exists – a typical 12-year-old girl.
Nine years ago, Maddie had a stroke. Today, she pursues her interests with determination, but hampered by its long-term effects. A splint supports her right leg and foot, she has little use of her right hand, and she finds school work challenging and tires easily.
Stroke is the UK’S fourth largest cause of death and Maddie is one of 400 children to have one each year. Yet awareness of its incidence in young people remains low. Delays in diagnosis and treatment, and patchy support, have compromised longterm outcomes for many of them.
New guidelines from the Royal College of Paediatric and Child Health (RCPCH) aim to heighten awareness among professionals, and equip parents with clear information. They also approve clot-busting treatments used in adult stroke but previously not recommended in children – thrombolysis and thrombectomy – in cases caused by a blockage rather than a bleed (in about half of children, and 80 per cent of adults). All this, says Claire, is welcome news. She admits to once being among the masses who weren’t aware stroke can occur in childhood and, she adds, even many health workers are unsure of the signs.
Even after diagnosis, accessing support for Maddie has been a battle. “When she was 10 the occupational therapists wanted to sign her off. She wasn’t using her hand. How can that be right? You are supposed to be entitled to continued rehabilitation if you have had a stroke. But trying to get it is another story.”
The possibility of stroke was first mentioned to Claire 24 hours after she ran into her local A&E – then in Kingston-upon-thames, though the family now lives in Oxford – holding Maddie in her arms. Unusually (“she was a seven to seven baby”) Claire had woken Maddie, then three, at 8am on a Sunday, finding her unresponsive. Claire and her thenhusband Marcus called NHS 111, and the call handler advised taking Maddie to hospital at once.
Doctors suspected an infection or virus. “It wasn’t obvious there was any one-sided weakness because she was limp all over,” recalls Claire. The following morning, Maddie was seen on the consultant’s ward round. “She told me she suspected a stroke and that Maddie needed a CT scan,” says Claire. “I was in disbelief. I thought stroke only affected the elderly.”
Brain imaging is the only way to diagnose stroke, and the delay in its use on children is a key shortcoming in identification and treatment. One RCPCH recommendation is that all children in whom stroke is suspected should have a CT scan within an hour of arriving in A&E, even in the absence of the FAST signs (“Face, Arms, Speech, Time to call 999”).
Realising that her daughter must be hungry, Claire brought her a bowl of cereal. “Maddie used her left hand and shovelled it into her mouth. Half fell out. She was grinning, but only on the left side. It was suddenly so obvious and very frightening.” The CT scan showed that the consultant’s suspicion was probably correct, and Maddie was transferred to St George’s in south London, where she underwent an MRI scan under general anaesthetic.
“The consultant neurologist explained that a clot had travelled to Maddie’s brain and she’d had a significant stroke,” says Claire. “I remember pictures of a brain and there was a big black bit where her tissue had effectively died.”
No reason was found for Maddie’s stroke, which is not uncommon. The causes of childhood stroke are still being researched but are known to include inflammation after an infection, blood clotting or vessel disorders, and congenital heart disease. Maddie was treated with aspirin to prevent further clots and a series of therapists assessed her needs. After being discharged two weeks later, these therapies continued at home and as an outpatient. “We didn’t think too far down the line. It was day-by-day,” says Claire.
The initial focus was on walking and talking. Two months after her stroke, Maddie was fitted with a leg splint and took her first steps. “They were faltering, like a baby’s, but it was an amazing moment,” says Claire. After four months she could say some words. When Maddie was five, she asked about her condition. “We always said she had a tricky hand and leg. She just said, ‘Mummy, why am I tricky when nobody else is?’ Then she started to cry.”
When Maddie started school, Claire tried to get a statement of special educational needs to ensure her daughter got the right help. “I had to fight hard. It was turned down at first, even though all the experts had recommended it. I took Maddie to the meeting and had the official watch her struggle to walk to the room. Everything was more of a challenge for her. That and fighting to get ongoing therapies have been the themes ever since.”
Anne Gordon, a neuroscientist, runs the Childhood Stroke Project in partnership with the Stroke Association, and worked on the new guidelines. “I hope we will now see better recognition across healthcare professionals that childhood stroke happens and that these children deserve quick diagnosis, support and care that is targeted and which anticipates what may be needed further down the track.”
Esmee Russell of the Stroke Association agrees the guidelines offer a great opportunity – but also a challenge. “To make them a reality, so children benefit, we need to see more efficient hospital services.” Money is not the only issue, she adds; awareness among NHS staff is key.
For Claire, finding ongoing, joined-up support for her daughter remains vital – as is helping her enjoy hobbies including horse riding with Abingdon Riding for the Disabled, and swimming with the RISE sports scheme, through which she has taken part in the London Youth Games.
“A child with a stroke is utterly consuming, but getting out, trying sport, was key to Maddie’s progress and me feeling like a normal parent,” she says. “I’m so proud of Maddie and everything she achieves, but this is a constant journey. We are still on it.”
‘I remember pictures of a brain – there was a big black bit where the tissue had died’