BRIAN DEER:
MATTHEW AND THE BURGER BUG Page 4
On
the evening that Matthew was transferred to Alder
Hey, Rachael nevertheless felt elated, almost
light-headed, now that he was getting the best. A
Royal Lancaster Infirmary nurse went with them in the
back of the ambulance, but Rachael ignored her and
quietly talked with the driver throughout the journey
south. Matthew was sedated and only woke for a moment
when a tailback on the M6 to the east of Preston
forced them onto the hard shoulder and he heard the
rumble of wheels on cats-eyes. For a couple of miles
they slid past columns of frustrated travellers,
stealing perhaps a second of each's thoughts before
vanishing into the dark.
A few
seconds more were devoted to Stuart, who drove behind
the ambulance in a blue Vauxhall Belmont, his face
sometimes glowing taillight red. He was 32, the same
age as Rachael, stocky and fit, with dark hair and a
moustache. He was often mistaken for the boxer, Barry
McGuigan. He must have looked to some who observed
that evening's procession as if he was sneaking
behind the emergency vehicle as a means of dodging
the jam.
Dialysis
worked wonders, despite the delay. Matthew perked up
straight away. In an isolation room on Ward A3, there
was plenty of cheerfulness. He looked a mess, with a
tube from the kidney machine puncturing his left
side, pumping 45 minutes in and 10 minutes out, to
drain off the toxins from his system. At the same
time he also had a tube into his hand because his
blood was being transfused. But he started to take an
interest in his strange new surroundings, allocating
doctors and nurses to a pantomime, in which he played
Peter Pan. Rachael had bought him a Peter Pan suit
and he now longed to put it on.
"Tell
me about happy things," he urged his mother and
father as they took turns to sit by his bed.
"We'll
take you home soon," Rachael reassured him.
"Promise?"
"Promise."
There
was also good news to be had in Morecambe: the other
children were getting better. Tom's bloody diarrhoea
passed after about a week, as the hospital had
predicted would happen for Matthew. Even a little
girl, the 6-year-old, who had also been diagnosed
with the haemolytic uraemic syndrome, eventually got
back to normal. There was always a risk of later
kidney problems, but for the moment they all seemed
well.
Their
recovery put perspective on the E-coli issue: not
every victim suffers badly. "Only about 5% to
10% of children who have bloody diarrhoea will get
haemolytic uraemic syndrome," explains Dr David
Hughes, Alder Hey's consultant paediatric kidney
specialist, one of only 35 in Britain. "Of those
who do, about half may need dialysis. And of those,
between 3% and 5% may die. If you are a doctor in the
community looking at this from one end of the
telescope, it is very few patients who will reach the
end that I look through."
But
Matthew's dialysis had started too late and on day 19
of his illness, Friday October 3, he suddenly took a
turn for the worse. As he was being weighed (about
2.5 stone) that morning, his right arm and leg
suddenly shot out and he twitched alarmingly. His
head rolled and one eye drooped. He was having some
kind of fit. It was one of the syndrome's
neurological complications as the poisons shed by the
O157 bug turned their attack against the child's
brain.
It
did not necessarily mean permanent damage, but was a
particularly worrying event. Hughes took Rachael and
Stuart to one side and discussed the possible
outcomes. He was a tall Glaswegian in his early 50s,
who looked like a thin Donald Dewar, the Scottish
Secretary. He towered over Rachael in his white coat,
with his arms folded, and gave an up-front
explanation. "Neurological symptoms are a bad
sign," he told her. "He may recover
totally. But there may be some degree of long-lasting
damage to his brain. Or - and you must be prepared
for this possibility - he may die."
Matthew
went under a scanner the following day and then his
parents retreated to Alder Hey's ground floor
restaurant and tried to come to terms with the
crisis. Around them the life of the hospital seethed:
babies in arms, sucking on bottles; toddlers trotting
ahead of their fathers; anxious 12-year-olds
shuffling sheepishly, not wanting to be thought of as
children. It was a rare moment of connection for the
separated couple. But they could do nothing but wait
and pray.
On
Sunday, 21 days since his symptoms began, their son
went into a coma and was moved to the intensive care
unit. The dialysis and transfusion tubes were now
joined by one into his groin, to administer drugs,
and two more into his nose. One of these passed into
his stomach to feed him, while the other linked the
unconscious three-year-old's lungs with a
life-support machine. His tongue was swollen and a
gum shield was inserted to stop him from biting it.
Rachael took out his Peter Pan suit and put it by the
end of his bed.
One
week later, Matthew opened an eye for 20 minutes, but
this did not mean anything good. When Rachael lay
beside him and stroked his hair he seemed to sob at
the sense of her presence. But there was no other
form of response from him: it was as if some part of
her child had gone. "Wiggle your toes if you can
hear me," she whispered. And she would talk to
him about his favourite place: Happymount Park, 20
minutes from their home. There was a big spiral slide
there and bright coloured playhouses. The trees were
full of birds.
Hughes
had the job of explaining the options. This was not
what had brought him into medicine. Ever since his
days as a student he had wanted to be a
paediatrician, and his sub-speciality, called
nephrology, had always been stimulating enough. There
is nothing as rewarding as sick children who get
better. And even when they left him with a lifelong
illness, their life's quality could be dramatically
improved. But in Matthew's case, there was neither
possibility. His brain was too far gone.
Rachael
and Stuart took two days to decide to switch off his
life support.
It
was Stuart's shift at the bedside when Matthew died,
at 11.45pm on the 40th day of his illness. Stuart
went and told Rachael before the nurses or doctors,
and she hurried to take care of things. There were
the marks of sticking plasters across her boy's face.
She cleaned them off and then washed him all over.
Then she put him into his Peter Pan suit, and the
next morning she finished the task. Matthew was
wrapped in a grey hospital blanket and, with Alder
Hey's chaplain and a nurse on either side of her, she
carried him down a long sloping corridor and out of
the building, close to the Ronald McDonald House, and
round the back to the mortuary. She was surprised by
how heavily he rested in her arms. He had grown while
he was ill.
In
time, what had happened would sink in with Rachael
and she would start to have hours and then whole
nights when she stopped blaming herself for what
happened. In time, Tom could see an older blond boy
without running up and bursting into tears. In time,
Stuart might talk about his son, but he has not done
that so far. And throughout the health service, in
time, the debate would begin about the need to
upgrade the priority given to the threat from the
E-coli bug.
"We
had never seen a case like this before," Telford
explains, speaking for everyone involved in the
system that let Matthew down. "Medicine isn't
planned. It's reactive. It is about building on your
experience."
But
before these times there was another motorway
procession, as a black private ambulance, with Stuart
driving behind, returned Matthew to the house in
Torrisholm. Rachael carried him up to his attic room,
where a friend had surrounded the bed with teddy
bears, and she put him down, as if to sleep. There
was nothing that she could do about what killed her
child. All she could do was take him home.
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