Reprint
A warrior mother lost to MMR lies
The Sunday Times, October 12 2014
Against all evidence, a parent still claims the jab caused her son’s autism. It shows the grip medical scares can have, writes Brian Deer
By any reckoning, E is a formidable crusader. She is intelligent, articulate and outwardly confident. She has been a public health manager and a school governor. Most of all, she is a loving parent. She champions her son, who has learning disabilities.
Why, then, has a judge branded her “devious and destructive”?
She is a disciple of Andrew Wakefield, the former doctor who was struck off in 2010. He terrified a generation of young parents by claiming that the triple shot against measles, mumps and rubella (MMR) causes autism and bowel disease. The British Medical Journal dubbed his research “an elaborate fraud”.
E is one of the scare’s forgotten victims. Now in her fifties, she has appeared at pro-Wakefield rallies with her son. She has denounced judges, doctors and journalists, including me. (I have met her but cannot name her.) She sued a giant drug company.
“We were all fighting for our children,” says a mother who campaigned alongside her. “When people are struggling and they have a very heavy load to bear, if someone like Wakefield comes along and says ‘I can make things right for you’, in the absence of anywhere else to go or anything to cling to, you are going to go there.”
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INVESTIGATION WAS CHECKED
I heard stories similar to E’s constantly while investigating the MMR scare for this newspaper: her son had his jab, he reacted badly, the doctor didn’t want to know, his condition worsened and later he was diagnosed with autism.
This narrative was recited by so many mothers that a reasonable person would assume it was true. But it has now been torn apart by a senior judge.
After a forensic examination of E’s story in the Court of Protection, Mr Justice Baker handed down his ruling in August. Initially secret, it was published last week without identities. Over 92 pages and 45,000 words, the judge accuses E of the most outrageous deceit.
“The critical facts established in this case can be summarised as follows,” Baker writes. “M [E’s son] has autistic spectrum disorder. There is no evidence that his autism was caused by the MMR vaccination. His parents’ account of an adverse reaction to that vaccination is fabricated.”
I am not surprised by this bluntness as I know that the children recruited by Wakefield were disordered before they received MMR. The High Court let me see the medical records when Wakefield unsuccessfully sued me and they were aired again when he was called before the General Medical Council.
All the same, E’s case is unnerving. She publicly crusaded with an untrue story that grew more flamboyant with each retelling, even suing a giant drugs company. Why?
M, now 24, had his first vaccinations at the ages of six weeks and eight months, with no record of any reactions. But one night, at the age of 10 months, he “nearly stopped breathing” and turned blue, according to an account taken later from his parents for an education service report.
“A clear indication of the trauma his body experienced from this illness was from that time onwards he could not bear his head to be anything other than upright,” this report said.
M received MMR almost eight months later. No reaction was reported in his notes for the next nine years. E cared for her son devotedly as paediatricians struggled with his emerging autism and significant intellectual delay.
MMR appeared as an issue only in September 2000 when M was 10 and she took him to a bowel clinic at Wakefield’s London hospital, the Royal Free, which had become a litigation factory for parents alleging MMR damage.
The hospital’s records show how E changed M’s story. His development had been normal, she said, until he received MMR when he lost speech and eye contact. He became “quite distressed, with fever, his eyes were fixed and his pupils dilated and [he] was not well for days”.
The judge writes that henceforth “M’s parents, and in particular his mother, have given increasingly vivid accounts of an extreme reaction to the injection experienced by M. There are descriptions of M screaming after having the injection, followed by six hours of convulsions, screaming and projectile vomiting . . . One note in an ‘auditory processing assessment report’ dated October 31, 2002 records E alleging that, following the MMR, M had remained in ‘a persistent vegetative state for six months’.”
She claimed that from the time of his vaccination M had suffered from “autistic enterocolitis”, a novel condition not accepted by medical opinion but cited by Wakefield in his spurious research. Other ailments itemised with incredulity in Baker’s judgment include loss of sensation in M’s hands and feet, adverse effects of “electromagnetic energies”, apparent brain seizures, meningitis, “leaky gut syndrome”, Lyme disease, uncontrollable sneezing, a shut-down of his urinary system, “tumours” in his gums, chronic blood poisoning, uncontrollable temperatures, a “black shadow sitting on his left sinuses”, stabbing pains in his groin, rheumatoid arthritis, heavy metal poisoning and “black gunge oozing from every orifice”.
E embarked upon often costly remedies, including tin-foil wrapping on electrical equipment in M’s room, cranial osteopathy, reflexology, six-hour sessions in an oxygen chamber and handfuls of pills.
“By this point, according to a list prepared by E and A [her husband], the range of biomedical interventions being supplied to M included a probiotic, six vitamin supplements, four mineral supplements, five trace elements, fatty acids, amino acids, enzymes and a range of homeopathic remedies,” Baker writes.
In his view, E subjected her son to unnecessary tests and interventions and/or lied about purported illnesses. She denied M the chance to develop more independence. She allowed the pain of a dental abscess to go untreated for a year, then planned to send the lost teeth to Wakefield. And there are the conspiracy theories: thousands of doctors, scientists (and myself) conceal alleged horrific injuries to children; judges deny fairness; and social workers wish to remove autistic victims from their parents.
“E’s allegations of multiple conspiracies are a fantasy,” Baker says. “I merely observe that, if the parents’ assertion about conspiracies is correct, it would amount to gross misfeasance in public office and the biggest scandal in public care and social care in modern times.”
The judge took time off to meet M for “about 30 minutes”, he reports. “At his choice, it started in the downstairs lounge. M seemed happy and relaxed. His ability to speak was limited but, with his advocate’s assistance, using communication tools, including pictures, he was able to tell me . . . that he liked certain sports and computing.”
M’s mother appeared in court without legal representation. She was scrupulously polite, raising a hand before speaking, but the court was not impressed. The judge found her controlling, manipulative, duplicitous and obstructive.
“In 35 years of family law and in the Court of Protection, dealing with many hundreds of families,” he writes, “I have rarely, if ever, come across someone who is so difficult.”
He adds: “E has dominated this hearing in a way quite unlike any other case in my professional experience. On more than one occasion she said that this case was about her and, although she was quick to retract that comment, when I pointed out that it was actually about M, there was no doubt that she felt she was the main focus of the inquiry. She was the centre of attention and, in my judgment, at times obviously enjoying the experience.”
He echoes the argument of her (unnamed) local authority, which initiated the court case. Four years ago, after a history of conflict with M’s carers, E persuaded a district judge to make her M’s “deputy”, with all but total control of his affairs. The authority sought to reverse this, arguing that E concocted the fraudulent MMR connection to get attention for herself and that the quack remedies were instruments of control. E, it said, was a case of “factitious disorder imposed on others” (previously known as “Munchausen’s syndrome by proxy”).
“To date, such abnormal behaviours have been most commonly described in mothers who have care of dependent children,” the court was told by Alison Beck, a consultant forensic psychologist at the Royal Maudsley Hospital, London, and Gwen Adshead, consultant forensic psychiatrist at Broadmoor Hospital, Berkshire, “but they have also been seen in nurses and in those who have care of the elderly and other vulnerable adults.”
Baker ruled that E not only had factitious disorder but was also “narcissistic”, “histrionic” and “emotionally unstable”. He revoked her legal deputyship status and told her to demonstrate a “fundamental change of attitude” or face “permanent steps” to restrict her involvement in her much-loved son’s life.
Here was a mother condemned like few others. It shows how Wakefield’s shadow continues to fall long after he was struck off. For E could be countless mothers, particularly in America where hardly a month passes without an appearance by Wakefield at conferences crowded with mother warriors. They trust him, I think, because the alternative is to blame themselves for their children’s condition.
The truth, of course, is that nobody is to blame and all deserve compassion, not fuel for their anguish.
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