Everyone says the same thing. “It was just an ordinary day.” Ollie’s mum,
Vicky, called it a “tea, bath, bed kind of day”. Nothing anywhere to warn
you that hours from now, the only thing of any consequence in your life is
going to be the gut-wrenching battle to keep your child alive.
Ollie, now 21/2, grabbed a grape from his sister’s plate one balmy evening
last summer and choked. It was obvious he was suffocating, from the look of
terror in his eyes. His mother tipped him over her knee, whacked him on the
back, then, as he turned blue, she put her mouth over his, and desperately
tried to force oxygen into his body, but it wasn’t enough. In the minutes it
took the ambulance to arrive, Ollie’s heart stopped and he sustained a
catastrophic brain injury.
Josh, 14, took his bike on his paper round for the first time ever one
Saturday, was clipped by
a lorry and hit the road so hard, his brain
rotated on its stem. His mum, Ginny, worried that
he’d taken unusually long
to cover the few houses on his round, had been putting on her coat to come
and find him when a neighbour appeared at her door. She thought Josh might
have broken a leg. In fact, the list of injuries, including a fracture to
the bone the brain sits on, were so severe, nobody thought he’d survive.
Every year, an estimated 20,000 children in the UK will acquire a brain injury
– some minor, some life-threatening. Here, as in the US, where hundreds of
thousands of children sustain
brain injuries every year, it is the most
frequent cause of disability and death among children and young people. The
Children’s Trust in Tadworth, Surrey, which for over 20 years has provided
care and therapy for children with multiple disabilities, is home to the
only specialist rehabilitation unit of its kind in the country; its 12 beds
account for three-quarters of the UK’s total provision. Every child here has
suffered a loss of self so profound it is almost impossible to comprehend.
The majority (45%) are referred after road traffic accidents, some after
falls, strokes and heart attacks and following complications during routine
operations. Others are suffering the aftermath of infections like meningitis
and encephalitis, which can wreak havoc on healthy brain tissue.
Many children are completely unresponsive when they arrive. Most can’t walk or
talk and have impaired hearing or vision or both. Some can’t breathe
independently and need artificial ventilation. Some can’t swallow – when the
brain is profoundly damaged, the swallow reflex is lost – and they’re fed
by tube either nasally or via a gastrostomy directly through the stomach
wall. They are accompanied by shattered families who may have travelled
across the country
to be here and still cannot comprehend how this thing
could have happened.
In the corridor leading to the therapy
rooms and classrooms, all the
paraphernalia
of the newly disabled is lined up against
a wall.
Wheelchairs and standing boards are individually fitted to each child and
have names on the back. Lewis, Cara, Daniel, Ethan. Every few minutes
someone glides by, on their way to occupational therapy or physiotherapy,
children who up until recently were haring round a playground. In the
hydrotherapy pool, a girl of about 10 with alabaster limbs lies motionless
in her carer’s arms. Her hands are drawn up in a spasm under her chin and
her eyes flicker in an upturned face. Everything about the scene
is wrong.
The size and stillness of the child, the arms wrapped around her, the
discomfiting
quiet on this weekday afternoon.
Every member of the 226 medical and care staff here takes on a counselling
role, because, as Helen Miles, the head of physio, explains, the grieving
process starts here. “Parents have spent weeks sitting by a child’s bed in
intensive care willing him to live. However realistic doctors try to be
about long-term problems, they don’t take it on board. Here, realisation
sets in. They know their child is not going to die and they’re starting to
accept that life will never be the same again.”
The physios’ first task is to get a child who has lain on their back for
months on an acute ward upright and in a wheelchair so that they can begin
to regain the muscle tone they have lost. The team of occupational
therapists (OTs) then look for purposeful, rather than reflexive, movement.
They test for vision, touch and taste and keep systematic records of the
slightest response. Even at this early stage, each child’s timetable is
highly structured: periods of quiet time are followed by intense activity to
help stimulate the brain’s sleep-wake pattern. A multi-disciplinary team
made up of physios, OTs and a play therapist discuss each case weekly and
there is a family meeting every three weeks. Every parent wants to know:
“Will my child get better?” It’s a question staff dread, as nobody has the
answer. Yes, they’ll be better than they are now, but they may never be
“better” in the way parents mean. There isn’t enough research to estimate
how long a child’s brain might take to respond and how long it will go on
healing. Generally, recovery is slow and unpredictable. The brain acts as a
control centre for movement, emotion and behaviour; following injury, all
these functions can be affected and, unlike other cells, neurons do not
regenerate or multiply. Instead, the brain reorganises its surviving
connections to establish function in a different way. Initial treatment is
aimed at protecting these surviving connections from further damage. Nobody
talks much of miracles here, though all the staff remember Alfie Russell,
whose parents were told he’d never recover and who is now studying sport at
college. But for every Alfie, there is another child whose progress is to be
measured not in terms of leaps in motor and language acquisition but in tiny
flickers of purposeful movement. There is a mantra here: “Nobody comes
through a head injury unscathed.” In other words, a child who has a serious
brain injury at two has a lifelong condition and will need support for the
rest of his life.
Bob the Builder is Oliver Jack’s favourite. He sits in his wheelchair, eyes
fixed on the screen, displaying new-found powers of concentration. Next to
him on a beanbag, a little boy with a nasogastric tube is lying under a
fleecy blanket, gazing but not seeing. “Ollie never used to watch TV before
his accident,” says Vicky. “He could never sit still long enough.” Ollie’s
active, mischievous nature is very much working in his favour now. Children
who were stroppy and determined before their accidents tend to do better
than those with more passive personalities.
Two weeks after his accident last August,
Ollie was not only unresponsive but
terribly distressed. Scans showed damage to the basal ganglia, an area of
the brain responsible for co-ordinated movement, but there wasn’t
much more
the hospital could do for him. When his parents took him home, he was still
tube-fed and couldn’t walk, talk or see.
For the past six months, either Vicky or her husband, Ian, has stayed with
Ollie in parents’ flats at the trust, swapping over midweek. While one is
here, attending intensive therapy sessions with Ollie, the other stays at
home with their two older children. After a couple of weeks, Ollie was
swallowing again. By October he could see. He can now roll, and can sit up
on his own for a few seconds. Huge leaps for Ollie, but the pace is
torturously, agonisingly slow. In the soft play area, the physio, Jacqui
Borgia, pushes his knees up to encourage him to move his arms forward. His
mum sings: “The children on the bus make TOO MUCH NOISE!” And he screeches
with laughter. “Ollie, where are your hands?” He can’t yet grasp, but he’s
alert and interested. Vicky looks exhausted. “You’re so desperate to see
improvements,” she admits later, “sometimes you imagine things. All they
will say is that he has responded well for a child with this kind of injury,
and he is continuing to respond. We don’t allow ourselves to think further
ahead. There are too many unknowns.”
Brain tissue consists of a soft, jelly-like substance containing billions of
interconnecting nerve cells and nerve fibres (axons) supplied with oxygen by
a vast network of blood vessels. But despite its ingenious protective layers
– cerebrospinal fluid, three layers of membrane and the skull itself – the
brain is still hopelessly vulnerable. When the human head is shaken or hits
something at high speed, the brain rotates within the skull; it’s called
diffuse axonal injury and accounts for almost half of all cases of severe
head trauma. As the different layers of the brain slide across each other,
the axons that stretch across them are torn or broken, which means the nerve
impulse can not be transmitted. And when the brain swells, as it often does
in response to trauma, the bony ridges on the inside of the skull itself
cause yet more damage.
If you have a focal injury, like a stroke, where only part of the brain is
damaged, the problems are likely to be local. But a traumatic acquired
injury is rarely that simple. When Josh Smith was hit by a lorry, the damage
was utterly devastating.
On the Glasgow coma scale, which assesses response to stimuli, 3 to 8
indicates severe
brain injury, 9 to 12, moderate, and 13 to 15, a mild
injury. Josh scored 3. When he was still
in hospital, Ginny remembers an OT
saying: “Have you thought about moving? Otherwise the house will have to be
adapted for his wheelchair.” “I thought, ‘But I don’t want the house messed
around – we’ve finally got it how we want it and the garden’s just been
done…’ You sit in the meetings and you hear ‘substantial brain damage’ and
you think, ‘That’s not my Josh.’”
When Josh arrived at the trust in December 2005, he couldn’t move, he was fed
through
a tube into his stomach and was doubly incontinent. Ginny describes
it as like having “a 101/2-stone baby”. She stayed with him constantly while
his father, Pete, made the four-hour journey from Stoke twice a week. “I’ve
cried buckets,” she says. Then corrects herself. “No, not buckets, rivers
over the past year.”
Ginny recalls gruelling therapy sessions from 9.30am to 4pm every day. “He
started to hold
his head up, then a hand, then he could put his thumbs up.
We pushed him and pushed him,” she recalls. “By the time he left the trust
he
knew how to make a cup of tea, but it would all be in the wrong order.
Since then he’s gone on and on improving. He’s back at school, with support,
and he can do most of the things
he could do before. His wheelchair is in
the garage now.” Ginny is certain that without intensive therapy, Josh’s
outcome would have been bleak. “There’s no speech and language therapy up
here, and we haven’t even seen
an OT. Without the trust, Josh would never
have got out of a wheelchair.”
The trust’s main house, a Grade I listed building, was once the country home
of
Great Ormond Street hospital. Children with TB and chronic lung
conditions were sent here to convalesce. After the war, vegetables were
grown in its vast gardens and sent up to London. Now a rat run of
wheelchair-friendly covered walkways dissects the grounds, leading to
clusters of residential houses.
Justin, a perky four-year-old, came here from Great Ormond Street in August,
having been in and out of hospital throughout his short life. He suffered
damage to the nerves in his diaphragm during a tracheotomy operation and is
now permanently connected to a ventilator. A sign on his door reads: “Well
done Justin for always working hard and for enjoying all the new experiences
you’ve had and remembering them later.” Despite everything, he is the
sweetest child. His parents, Christa and Tim Tuohy, who moved house to be
near him, are now taking their tentative first steps towards managing his
complex health problems at home Children with acquired brain injury live at
the trust for anything from six months to a year, depending on whether
further improvement is possible and for how long funding is available. Five
members of staff are permanently locked in negotiations with primary care
trusts (PCTs), some of whom are reluctant to stump up the £697 to £1,230 a
night it takes to keep a child here. One in 10 applications for places is
unsuccessful, which means a child who would have received two sessions of
physio and occupational therapy a day at the trust might instead have one
session every other week at home. Conversely, some children stay longer than
they should because problems with planning applications mean that homes are
not ready to receive the newly disabled child who can no longer skip through
doorways. For people who are already traumatised, it must feel as if at
every turn a fog of bureaucracy enfolds.
The trust needs to raise over £7m to rebuild the rehabilitation centre. The
new, state-of-the-art centre would have 10 beds downstairs for
technology-dependent children and a further 10 upstairs. Currently the
bedrooms on the residential unit are small and most are shared. Each door
bears several names in wooden painted letters or on handwritten signs. The
normal clutter of childhood sits side by side with hoists and feeding pumps.
A little body forms a hump in one bed, wires from the monitor tracing oxygen
levels in his blood snaking across the Thomas the Tank Engine duvet cover.
In the sitting room, a mother sits clutching a mobile phone in one hand while
her child sleeps, daytime TV flickering silently in front of her. There is
no private space here at all, which is a problem, since there is less
socialising between parents than you might imagine. People
can’t bring
themselves to say: “What happened?” The answer is too awful, the stages of
grief unpredictable. One child’s progress can cause unimaginable distress to
the parent of another whose recovery is less dramatic. Ginny Smith recalls
one father having to leave the room
when Josh finally stood unaided.
“Parents don’t want to be seen to be not coping,” says a senior social worker,
Anne Caldwell. “But the grieving process may have only just begun. You get
denial first. As if accepting what has happened somehow makes it permanent.
What parents find most difficult is that there are many definitions of
getting better. To them, ‘getting better’ means getting back to where their
child was before the accident. Getting on a bike again, going to school. For
many, that just isn’t going to happen. We’re trying to help them accept that
their child may not get better in the way they imagine, but that where they
are now is good.”
In a large hall, visiting musicians strum their harps while all around,
tracheostomies are cleared and children with darting eyes are soothed and
suctioned and tube-fed. One little boy with an acquired injury sits in a
wheelchair so new it still has the instruction manual
hanging off the back.
His mother wears an expression of quiet desperation.
A team of play specialists led by a play therapist, Jan Vance, works on each
of the trust’s houses. They greet children and their families and practise
intensive interaction skills with those who are devastatingly injured. “You
watch and you listen and you wait for the child’s responses,” says Vance.
“Sometimes these are very minimal things. The flicker of an eye,
or a
groan. Then you mirror that and amplify it. You don’t know at what level the
child is comprehending but you’re saying, ‘I’m here for you and the pace is
yours.’ It’s almost as if the child is a house with all the doors and
windows shut. There’ll be a tiny chink somewhere and
it’s my responsibility
to find a way in.”
The play-therapy room is eerily,
disturbingly tidy. There’s an ambulance and
lots of cars set out on a table. Stiff-limbed
and officious, the Playmobil
people seem to be looking at something. There’s a sense in here of
extraordinary control. And of something explosive waiting to happen.
Sometimes a child will come in, flip the “Do not disturb” sign on the door
and talk about what has happened to him and how he’s feeling. Other days,
he’ll just line all the figures up and crash the ambulance.
“There’s often a theme of brokenness,” says Vance. “Or children will use the
characters to explore sadness and fear. Until now, everything has been about
keeping them alive and managing the loss. Now they’re worried about how
they’ll cope in the world from a wheelchair.”
Central to the relationship between play therapist and a child is the notion
of symbolic distance. No child is ever questioned in here, but they often
choose a toy that is quite close to the thing they are frightened of. It
might be a car. Or a toy bus full of little figures might be used as a
hospital stuffed with people. “They play with what best echoes their world
of anxiety and loss and grief,” says Vance. “Every child with an acquired
brain injury, regardless of their cognitive function, has lived through a
major loss and they are in turmoil, experiencing huge anxieties about the
future and themselves.”
After every session, Vance restores everything in the room to its original
position. “In a world filled with chaos and change, this room is always as
it was, and that’s a very powerful message.”
Ryan Caton, 15, was hit and thrown in the air by a car, then dragged along by
another after he ran across a road in Stevenage in January last year. He
suffered broken shoulders and sternum, a punctured lung, fractured pelvis
and needed extensive skin grafts. “But the worst thing,” he says, tapping
his head, “was this.” When Ryan arrived at the trust six months ago, his
body was hunched over, his speech was slurred and he was impulsive, agitated
and restless, making it very difficult for his mum, Jen, to deal with him.
All he would say when he first came home from hospital was “I want to go now.
I want
to go now,” says Jen. “He didn’t know where he wanted to be – he
just had to be on the move. Ryan had carers for two hours a day at one
point, but because they weren’t qualified they thought he was just badly
behaved. I’ve got four children and I was trying to deal with him and pick
up the rest of the family. In the end, I put up a white flag. I couldn’t
cope any more.”
“Before I came here, I was walking and talking but I wasn’t behaving
normally,” says Ryan.
“If I thought something – and it wouldn’t be nice – I
couldn’t stop myself saying it. My head still
tells me to say horrible,
sick things, but now I can stop them coming out of my mouth.”
For the past couple of weeks an OT, Lorna Wales, has been preparing Ryan for a
trip to a cafe later in the week. On Monday, she goes through a bus
timetable with him, then he uses his mobile phone to set various alarms, one
to catch the bus, another to remind him when to leave the cafe. Later, Ryan
attends lunch club with his friend Tom. Having said, “It’s embarrassing and
boring. I’m not doing it any more,” he cheerfully cooks fish fingers in the
mock-up kitchen while Tom, 17, who is confined
to a wheelchair, spreads
Flora on two slices of bread with painstaking deliberation. Tom is dressed
in Nike trainers and an Enjoi skateboard T-shirt. “How do you think you did,
Tom?” asks another OT, Jo Lloyd. “Um, maybe a bit better than last time?”
Tom looks up with Bambi eyes, unsure. “I think
so too,” says Lloyd. “And
you initiated questions. Well done.”
Back in the permanent residential house, a little girl on shaky legs, dressed
in a pumpkin outfit, is on her way to hydrotherapy. Daniel, 12, who can
neither walk nor talk after a road accident but has a beatific smile, beams
at everyone. “One girl I know thinks I should be a model,” Ryan quips,
showing me his aviator specs. Come Thursday, Ryan remembered he had to meet
the OTs at the cafe, but missed the bus because he couldn’t bring himself to
cross the road. He had forgotten he needed to walk to the traffic lights and
wait for them to change.
Fiona Adcock, the head of the community-support team, works
in the community
with children who look to the outside world as if they are back to normal
but whose behaviour is completely changed. “Problems may only become really
apparent when they go to secondary school,” says Adcock. “They
know they’ve
got homework but they can’t remember to do it.
The timetable makes no sense
to
them, they can’t follow instructions, and they can’t self-motivate.
Five or six years post-brain-injury,
often no one is looking at their
behaviour and putting those two things together.
“When a parent asks me, ‘Will I ever get my child back?’, I have to say no,”
says Adcock. “There is child A and child B. The longer you hold on to child
A, the harder it will be to accept that child B is the child you have
brought home. In my experience, children never walk away without problems.”
Around the walls of the school room, where all children follow the national
curriculum, whether
they are being taught science or to pick coloured
letters from a sheet with their eyes, are written words chosen by
themselves: Care, Courtesy, Courage, Celebration, Consideration. “Ryan has
achieved so much here,” says his mother. “And I feel very grateful. But you
feel guilty, too, when you know that while he’s had six months’ funding,
another child with serious problems might only have two months.”
The question in my mind as
I leave the trust for the last time is this: if
thousands of children are brain-injured each year and only a handful receive
intensive rehab
at the trust, what happens to the others? The Department of
Health gave us this statement: “Primary care trusts (PCTs) are responsible
for commissioning healthcare and receive funding relative to the health
needs in their area.” In other words, the department has passed on the
responsibility, and each PCT is carefully minding its own budget.
Specialist rehabilitation is expensive. It’s much cheaper in the short term to
provide a care package at home – an hour of physio or OT once a week, speech
therapy if you’re lucky – but so much more expensive in the long term.
Children like Josh and Ollie are the fortunate exceptions. The rest struggle
on with inadequate help, a possible future in residential care away from
their families – and bleak prospects for improvement.
To make a donation to the Children’s Trust, call 01737 365 020, or visit www.fundraising.thechildrenstrust.org.uk
