Does Laurence prove that some doctors want to hide the
truth about MMR?
By Sue Corrigan
The Mail on Sunday January 22, 2006
Dr Andrew Wakefield faces ruin because raised doubts about a controversial vaccination, but the astonishing story of this youngster's suffering -and cure - could be the vital clue that shows the scientist was right all along....
On the day just over three years ago that Prime Minister Tony Blair first triumphantly claimed victory for the Government in the fight to prove MMR safe, Sue McGowan was too busy even to notice.
She was focusing all her attention on keeping her ten-year-old autistic son, Laurence, alive with the only thing he could still bear to swallow. 'Six teaspoons of cranberry juice, every half-hour. That's how critical it got in the end,' says the mother of four from Kenilworth, near Birmingham. 'I took Laurence out of school in 2001, when he first began refusing food and looked after him at home by myself. Nobody came near us for the next two-and-a-half years.'
It is just before Christmas and we are in a hotel room on Long Island, just off the coast of New York, on the final stage in Mrs McGowan's eight-year quest to discover what is making her small, pale son so ill. In a few hours, 13-year-old Laurence is to undergo medical tests he could have had years ago in Britain, but has repeatedly been denied by doctors and NHS hospitals. His parents had to borrow £7,000 to finance the trip. But now he will get the tests with two of the very few specialists in the world openly willing to investigate him.
One is gastroenterologist and paediatrician Dr Arthur Krigsman, an associate
professor at New York University. The other is Dr Andrew Wakefield, the
clinical researcher driven out of Britain and now living in America after
suggesting a link between a new form of bowel disease - which Laurence
appears to suffer from - autism and the Measles, Mumps and Rubella (MMR)
With Laurence the first of a number of autistic British children the two men have agreed to treat, and parent activists claiming there are at least 2,000 sick children who can't get treatment in Britain, a great deal hangs on the tests to be carried out on this snowy day in Long Island.
If they show Laurence has long been suffering from a painful inflammatory disease that has gone untreated in the UK, as Dr Wakefield firmly believes they will, then the entire British political and medical establishment's approach to the bitter MMR controversy will be open to new questioning.
On the other hand, if the endoscopies, tissue biopsies and blood tests show nothing, then the reputtion and standing of the already embattled Dr Wakefield will be further undermined.
British doctors have repeatedly insisted there is nothing physically wrong with Laurence. If he is indeed just a 'fussy eater', or his bowel problems are a standard by-product of brain damage, 49-year-old Dr Wakefield knows he'll be condemned for encouraging British parents to embark on an arduous and expensive wild-goose chase.
Laurence began suffering from a strange, undiagnosed gut disorder from the age of five. By nine, he was shunning all food and most liquids. With a swollen, distended belly and stick-thin arms and legs, he weighed just two-and-a-half stone.
Some time later he did start eating again, but that is when he also began screaming for hours at a time, hitting out violently and waking repeatedly through the night. Alternating between diarrhoea attacks and severe constipation, he also suffered two bowel haemorrhages last year.
But the many doctors and hospitals his mother approached for help, responded oddly. As soon as she mentioned her son was autistic, appointments were refused or cancelled.
A letter in Laurence's thick file of medical notes reveals that a gastroenterologist at a Midland's hospital tried to have him admitted to a psychiatric ward without even examining him. Staff at another hospital suggested Social Services be called in, suspecting Mrs McGowan might be starving her son deliberately. In view of Laurence's obvious ill health, these responses bewildered his mother.
'Why not just investigate the child? It's pretty simple, isn't it?' Mrs McGowan says indignantly. 'No one would even explain to me why he couldn't have any tests, apart from just saying, over and over again, "It's his autism. It's all just part of being autistic." The best one casualty doctor could do, when I seriously thought Laurence was about to die, was suggest I try organising his food in a different pattern on his plate.'
So why couldn't the McGowans get medical help for their son anywhere in Britain? And what of parents' claims that thousands of other autistic children around the UK are similarly being denied tests and treatment?
In a six-week investigation, The Mail on Sunday has talked to many parents of autistic children throughout Britain about their experiences.
One mother says the same gastroenterologist who tried to get Laurence admitted to a psychiatric ward refused to investigate her desperately ill daughter too, saying only that any tests would be 'inappropriate'.. What would lead a doctor to say that to a mother pleading for help for her child? And why would an NHS consultant in a London teaching hospital tell another parent he would investigate her autistic son's intestinal problems if he could, but 'I'm not allowed'?
The answer is that these children, and their symptoms, are the front line of the battle over MMR, and of claims that the live measles virus in the MMR triple vaccine may be causing gut and brain damage.
In an article published in the Lancet medical journal in 1998, Dr Wakefield and a team at London's Royal Free Hospital claimed to have discovered, in 12
brain-damaged children, a previously unrecognised bowel disease, later
dubbed by Wakefield 'autistic entero-colitis'.
Colonoscopies performed on scores of autistic children and teenagers in the United States, Italy and Venezuela have since backed up his claim of an apparently new disease, differing in several crucial ways from the well recognised inflammatory bowel diseases Crohn's and ulcerative colitis.
Dr Wakefield's highly controversial assertion is that this new gut disease may be causing brain damage in certain vulnerable children, resulting in a particular form of autism.
Even leaving aside the vexed question of whether or not MMR jabs could be one cause of the bowel damage, this theory overturns decades of received medical wisdom; that autism is a genetic brain disorder with which children are born.
According to the British medical and scientific establishments, this is a baseless medical scare story. They say there is no credible evidence a new form of bowel disease exists in autistic children, let alone that the live measles virus in the MMR jab, first given to children at around 13 months of
age, may be causing it.
Mr Blair declared the matter settled back in October 2002, when his official spokesman boasted at a Downing Street media briefing: 'We are winning the argument that MMR is safe.' The PR campaign designed to reassure nervous parents still had some way to go, the spokesman conceded, but 'intellectually', the Government was winning its case.
But this battle is not over, and caught in the middle of no-man's-land are thousands of children just like Laurence, repeatedly being refused even the most routine investigations. In many cases, doctors are refusing even to see children before announcing that tests aren't necessary.
The very few gastroenterologists and paediatricians in Britain who are agreeing to investigate and treat autistic children with bowel disease are doing so not only in secrecy, but even fear. Their names are passed along a network of parent and scientific activists and none was willing to speak publicly.
A senior paediatric gastroenterologist at a major London teaching hospital did, however, agree to comment off the record. 'The points you raise about children with autism having difficulty in accessing medical services in Britain are well made and have been of concern to me for some time,' he said
One mother says her GP refused to refer her autistic child to the Royal Free where some extremely ill children are still being investigated and treated, on the grounds that the specialists there had been 'discredited' for doing this work.
Finding any form of bowel disease in autistic children is not, it seems, a smart career move these days, so many doctors are refusing even to look. Mrs McGowan says: 'They've all seen what happened to Dr Wakefield and they're petrified.'
Later this year, Dr Wakefield and two former colleagues from the Royal Free face a hearing before the UK's General Medical Council on charges of professional misconduct relating to their original research. If found guilty all three could be struck off the medical register in the UK.
The charges relate to Sunday Times allegations that the research was begun at the behest of lawyers acting for some 1,200 parents planning to sue MMR's three manufacturers, and was partly funded by a £55,000 grant from the Legal Aid Board. Freelance reporter Brian Deer claimed Dr Wakefield concealed this from his fellow researchers and failed to declare the apparent conflict of interest to The Lancet when submitting the team's findings.
Dr Wakefield, who now runs a clinic for autistic children in Austin, Texas, is currently suing both Mr Deer and The Sunday Times for defamation, and says he is confident he will be cleared by the GMC.
And he firmly believes the Long Island tests will show Laurence is suffering from bowel disease.
Breaking a long, self-imposed media silence to speak to The Mail on Sunday,
he said: 'There's nothing ambiguous or uncertain about Laurence's
condition in my mind. He has all the appearances of a
child with intestinal disease. To stand back and watch
a child continue to suffer as Laurence has suffered
would be professionally unacceptable and morally reprehensible.
'This is a battle for the soul of modern medicine. Do we listen to patients ---in this case those many parents who know their children better than anyone else and who first raised the possibility that MMR might be the cause of their children's problems - and treat their views and opinions with respect? Or do we insist we doctors always know better and refuse to listen?
'I have always believed my first duty to my patients is to treat with respect what they have to say. If parents say their autistic children are suffering from serious gut and bowel problems, then the medical profession has a fundamental obligation to investigate those claims.'
One of the arguments commonly advanced against parents who allege their child has been damaged by a vaccine is that, stricken by guilt and grief, they need to find some external cause to blame. It is also claimed that such allegations are frequently motivated by hopes of huge damages pay-outs.
But Mrs McGowan, a 47-year-old housewife now studying part-time for a fine arts degree, and her accountant husband, Alfred, are neither looking for something to blame nor someone to sue.
She says: 'We have never at any stage made any claims about what caused
Laurence's illness, because we have no idea what his illness is. That is
what I am trying to find out.
'I have no idea if MMR is to blame, and have never suggested it might be. But you only have to mention the word "autism" and the doctors fly into the rafters.'
It is at this point she leaves for a clinic just off Long Island's Sunrise Highway, finally taking her son for the medical tests she's sought for so long. Seven hours later, she hands me Dr Krigsman's initial report, along with endoscopy photographs of Laurence's intestinal tract which reveal a 'carpet' of small, surface ulcers and patches of inflammation. Along with a later report from New York's Mount Sinai Hospital, the results conform in every detail with the disease described by Dr Wakefield in 1998 as autistic entero-colitis.
The Mail on Sunday has obtained independent confirmation of that fact from four medical sources.
The next day, Dr Wakefield says the ulceration is among the most severe either he or Dr Krigsman had encountered. Later he adds: 'These results explain completely Laurence's refusal to eat or drink, his violent outbursts and disturbed sleep, the dark rings under his eyes and pallor, his pronounced failure to thrive and two bowel haemorrhages. 'Moreover, they show his condition is treatable with standard anti -inflammatory drugs, exactly as we'd hoped.'
Mrs McGowan reports that within three weeks of starting to take anti-inflammatory drugs, Laurence is 'happily eating food he hasn't touched
for years and his mood and behaviour have been transformed'.. She also says he is starting, for the first time in years, to speak more fluently.
None of this proves anything about the feared link between MMR, bowel disease and autism, of course. That remains a theory that will only be proved or dispelled by scientific and clinical studies that the Government remains so reluctant to authorise.
But Dr Wakefield remains certain he will, sooner or later, be proved correct 'I couldn't possibly do any of this if I didn't think that,' he says.
A Department of Health spokesman said: 'MMR remains the best form of protection against measles, mumps and rubella. It is recognised by the World Health Organisation as having an outstanding safety record and there is a wealth of evidence which shows children who receive the MMR vaccine are no more at risk of autism than children who don't.'
In the meantime, what is to be done about the estimated 2,000 autistic children in Britain who, just like Laurence, apparently suffer from a bowel disease the Government and medical establishment insist does not exist?
In 2001, a delegation of parents and doctors, including Dr Wakefield, alerted the Government to their plight. At a meeting in Downing Street, the then Deputy Chief Medical Officer, Professor Pat Troop, listened to their pleas for specialist facilities to investigate and treat these children, and promised to get back with the Government's response.
They never heard another word. When I tried to ask Professor Troop, now head of the Health Protection Agency, why there had been no response, she sent a message back via her secretary that she couldn't comment because she no longer had the relevant files.
Perhaps the time has now arrived when someone might care to dig them out?