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Escherichia coli | e-coli o157

The Sunday Times

Matthew and the burger bug

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.

Escherichia coli | e-coli o157
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