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)
triple vaccination.
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?