The Doctor Who Fooled the World

by Brian Deer

  There’s no denying it. Even seated three rows back on the right-hand side, I can see what the doctors are getting at. The videos are powerful, with only one shortcoming: they were recorded before Michelle’s MMR. Both Fombonne and Wiznitzer are witnesses for the government. And the tapes are date-stamped: from May 25, 1995, seven months prior to the girl’s three-in-one, to December 17, 1995, three days in advance of the injection.

  The recordings had been obtained through a government “motion for production.” Videos were mentioned in a report by Michelle’s gastroenterologist—a New York pediatrician named Arthur Krigsman, who scoped for Thoughtful House. The family’s lawyers opposed the federal application, but the special master, Hastings, overruled them. With down-brushed white hair and matching cowboy mustache, Hastings was a former tax lawyer and the father of three children. He said the tapes “could yield important evidence.”

  He was right. They did. And they weren’t alone in raising doubt over the family’s prospects. Medical records suggested that Michelle didn’t smile for four to six months, or sit independently until eleven months of age. Her head circumference was assessed as larger than 95 percent of girls of her age, and—also before the shot—pediatricians’ noted social delay, language delay, and intractable constipation.

  There was nothing to establish that Theresa blamed vaccines before she heard of Wakefield. A better fit with the facts—as I found so often—was a feedback loop of confirmation. Parents, especially mothers, heard his claims and interpreted their children’s histories in that light.

  After the “opioid excess” fiasco in Barr’s class action, Theresa’s lawyers skipped the stoned rodent model of childhood autism, arguing instead that the virus directly attacked her brain. But the government side responded that this would typically cause death, and pointed out there was no epidemiology associating autism with outbreaks of measles.

  The case was a bust. Just like Barr’s. But like him—with Kirsten Limb and their class action professionals—the lawyers and experts would be paid from public funds (around $300 an hour for unsupervised preparation) even if, and when, the families reaped nothing but stress, suspicion, and bitterness.

  For the three special masters, the evidence was overwhelming. Tragically, Michelle must get nothing. She was nearly thirteen now, and was wheeled into court, in baggy casual clothes and huge ear-protectors: a sobering sight for us all. On top of autism, epilepsy, and cognitive delay, she suffered with arthritis and optic nerve damage. She didn’t speak, was fed through a tube, and hit herself on the eye socket and chin.

  “I feel deep sympathy and admiration for the Cedillo family,” said Hastings in his ruling. “And I have no doubt that the families of countless other autistic children—families that cope every day with the tremendous challenges of caring for autistic children—are similarly deserving of sympathy and admiration. However, I must decide this case not on sentiment, but by analyzing the evidence.”

  Two more test cases would follow this hearing: for Colten Snyder of Florida and William Hazlehurst of Tennessee. But the science, and the upshot, were the same. In 680 pages of rulings from the special masters, Wakefield was named (to my count) 360 times, as his reputation was torn to pieces by the US courts like a medieval hang, draw, and quartering.

  “The result of this case would be the same even if I totally ignored the epidemiologic evidence, declined to consider the video evidence, and/or excluded the testimony of Dr. Bustin,” Hastings said, in a 183-page ruling published later. “Unfortunately, the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgment.”

  Could there be a worse drubbing for a man of ideas?

  Yes, there could. It was about to begin.

  TWENTY-FOUR

  Enterocolitis

  From the time of my first stories, it took lawyers for Britain’s General Medical Council (known to the nation as the GMC) nearly three and a half years to reinvestigate my early findings, conclude they were accurate, and bring Wakefield, John Walker-Smith, and Simon Murch to a hearing on charges of serious professional misconduct. And it would be another two and a half—on and off, with adjournments—before that saga finally resolved. In total, the proceedings ran for 217 days: longer than the trial of O. J. Simpson, then the most famous legal duel in history.

  The original plan was for a snappy thirty-five days: centered on charges of dishonesty and fraud by Wakefield, and on a false claim, published in the twelve-child paper, that they’d had ethics committee approval. But his two gastro amigos threw the proceedings into turmoil by changing their stories about their roles in the affair. They now said the scopings, spinal taps, scans, and so forth were solely for the children’s care.

  That came as a surprise to parents, such as Ms. Four and Mr. Eleven. They’d gone to Hampstead for vaccine damage tests. And it surprised me, too, since those tests had been agreed on by a firm of lawyers before a single child was admitted. They were tests set out in the “clinical and scientific study,” sliced into two papers, clinical and scientific, submitted to The Lancet, promoting the “new syndrome” at the core of Richard Barr’s lawsuit.

  But, for me, the clinicians’ tactics were a gift. They literally opened the books. With Walker-Smith’s lawyers, in particular, now arguing that every procedure was for the children’s benefit, the hearing reviewed—in agonizing detail—every last diagnosis, vaccination, and symptom, including from the trove of confidential medical records that I read at my lawyer’s office.

  The dance began in July 2007. And what a dance it was. In an eight-story glass office building at 350 Euston Road, London, the ultimate data that launched the vaccine crisis would be spoken into the public record. Like Lord Justice Stuart-Smith, two decades before, I could review the children’s cases, patient by patient. I could hear what was what. And what was not.

  “I am going to turn to Child Ten, and the Royal Free records,” counsel for the defense or the prosecution would say. And around a long third-floor room—with tubular steel furniture on a blue and ochre carpet—men and women would stretch toward stacks of cardboard crates, each crammed with three-inch-thick binders of documents. I counted fifteen stacks. Seven crates in each stack. And—my word—what secrets lay within.

  This was some tool for an investigative reporter. On two sides of a hollow rectangle of seventeen tables, the three accused men and the council’s five-member “fitness to practice” panel (three doctors, two lay members; three women, two men) faced each other across a lawn of empty carpet and surrounded by a phalanx of lawyers. I sat by the door, capturing what they said: the only reporter in the room.

  “Child Seven . . .” They all stretched. “Child Nine . . .” Stretch again. Day after day. Month after month. “Now, I’d like to return to Child Ten . . .”

  My first big break came on day thirty-two: Tuesday, September 14. Seated and sworn in the witness chair in front of me was a perky consultant named Susan Davies who’d led the pathologists in the project. She wasn’t among the Lancet paper’s original cast of authors but was added to the credits between its first submission and the version unveiled in the Atrium.

  Right off, she explained the meticulous routines with which her department handled bowel biopsies. A slice from each snip of tissue, stained and mounted on glass, was examined by two doctors through a double-headed microscope, then described in reports that were printed and double-signed, discussed with clinicians at weekly meetings, and filed in the patients’ records.

  Those pathologists looked especially for any excess in populations of inflammatory cells—normally present, within reasonable parameters—and, most importantly, for damage, or distortion, involving the delicate epithelium and pit-like crypts, which surface the large and small intestines.

  She was trucking along fine, with nothing too stimulating. But, at half past twelve, after the morning coffee break, binders for Child Two were yanked from the crates, and
people turned to page 264. First came the report which had caused such excitement when Wakefield, Walker-Smith, and Murch had believed that—yessss—the eight-year-old had Crohn’s. That was followed by another, when the buzz wore off, and a likely food intolerance was acknowledged.

  I noted that change, which wasn’t mentioned in The Lancet. Then, as more binders were pulled and flopped open on the tables, phrases began to drift between counsel and witness like tennis balls lobbed long and high. “No increase in inflammatory cells,” I heard. “No abnormality detected.”

  As the paper’s Table 1 had documented, years before, Wakefield’s syndrome first rested on “chronic non-specific colitis”—inflammatory disease of the large intestine—in children diagnosed with autism. Second was tabulated “lymphoid hyperplasia”: the ugly swollen glands, past the valve into the ileum, that so shocked the children’s mothers. Taken together, he proposed an “enterocolitis”—inflammatory disease of the small bowel (enteritis) at the same time as the colitis in the large bowel.

  “Enterocolitis,” a source explains to me after the case, “is when gastroenterologists get really excited.”

  In this, the paper claimed a “unique disease process” and sought to link it with the three-in-one MMR. Chronic colitis was tabulated for eleven of the twelve, and the swollen glands were listed in the ileum of ten, with the Lancet text summarizing the discoveries.

  We describe a pattern of colitis and ileal-lymphoid-nodular hyperplasia in children with developmental disorders.

  But through the rest of that Tuesday morning, and into the afternoon, Davies was taken through her department’s reports. And most didn’t square with The Lancet. Time and again, where the journal reported disease—in the opaque phrase “non-specific colitis”—her department’s reports, of great medicolegal status, noted humdrum, everyday findings.

  Large bowel type mucosa within normal histological limits . . .

  Minimal inflammatory changes. May be the result of operative artifact . . .

  No significant histological abnormality . . .

  No architectural abnormality. No increase in inflammatory cells . . .

  So striking were the differences that an expert for the hearing—a professor of pediatric gastroenterology named Ian Booth—filed a shocking assessment in a report. On the basis of what he’d seen (and I would hear from my chair), he couldn’t exclude “scientific fraud.”

  “In six cases (3, 4, 8, 9, 10 and 12), the colonic histology is reported as normal, or virtually normal, but is presented as a colitis in the Lancet publication,” he wrote, in a document I obtain through a Wakefield associate. “In two cases (2 and 5), there are minor histological abnormalities reported in the clinical pathology but presented in a more exaggerated, unqualified form.”

  Here, for example, is the report on Child Four: Wakefield’s “most compelling” early case. The boy was listed in Table 1 with “chronic non-specific colitis” and “ileal and colonic lymphoid hyperplasia.” But the hospital’s findings, read aloud to the panel (and separately peer reviewed for my investigation) were normal.

  The pathologists found no pathology.

  I. Small bowel type mucosa with a lymphoid follicle.

  II–VII. Large bowel mucosa, some with attached muscularis mucosae with no evidence of architectural distortion or increase in inflammatory cells in the lamina propria. Lymphoid follicles with germinal centres are present in many of the biopsies. No cryptitis or crypt abscesses are seen. The surface epithelium appears intact. No granulomas, ova or parasites are seen.

  Comment: Large bowel series with terminal ileum, with no histopathological abnormality.

  The leading lawyer for the GMC, a slender, blonde, and black-dressed Queen’s Counsel, Sally Smith, asked Davies to explain her reaction when she saw the first write-up of the twelve-child study. “What was your overall view of the terminology used in relation to the histology findings in the Lancet paper? Just when you read the paper.”

  “I was somewhat concerned with the use of the word ‘colitis.’ ”

  “First of all, what did you understand that word to mean?”

  Davies paused to gather her thoughts. “I personally use that terminology, ‘colitis,’ when I see active inflammation, or a pattern of changes which suggest a specific diagnosis. And it was not my impression that the children coming through in the spasmodic way that they had, I had formulated a sense of a distinct pattern warranting that terminology.”

  “Now, you say you were concerned. What was the nature of your concern?”

  Another pause. “Well.” She paused again. “As I’ve explained, the use of the word, predominantly, ‘colitis.’ ”

  I took advice on the diagnoses tumbling from the binders. And it seemed she was right to be concerned. “In the present reports and patients, overall,” says Karel Geboes of the Catholic University of Leuven, Belgium, and one of Europe’s most respected gastrointestinal pathologists (commenting on all but the American child’s reports), “it is my impression that eight of the eleven were normal.”

  Wakefield, however, had been looking for his syndrome, and he had taken another stab at getting what he wanted by seeking a second opinion. During twenty-one days in the witness chair, he said the “ultimate conclusions,” and “final determinant of the diagnoses” in Table 1, weren’t from Davies’s pathology department but from a longstanding associate in the medical school. His name was Amar Dhillon, who’d gained dozens of credits as a coauthor with Wakefield and had devised what he called a “grading sheet” to score these children’s biopsies.

  But after the doctor without patients finished giving evidence, I obtain copies of the sheets he said were Dhillon’s. And I’m told by four specialists, in Europe and the United States, that these, too, were overwhelmingly normal. Essentially, Dhillon had captured the same picture as Davies, albeit expressed more in tick-boxes than narratives.

  “It is definitely not correct that the children had enterocolitis,” Geboes comments.

  “I’m astonished, really,” says Paola Domizio, professor of pathology education at Queen Mary’s College, University of London.

  “These are the kind of things that we in our practice here would ignore completely,” says Henry Appelman, professor of surgical pathology at the University of Michigan.

  Then things got worse, as they so often did. Dhillon denied reporting colitis. “In none of my grading sheet observations have I stated ‘colitis,’ ” he pointed out in a statement responding to an analysis of the sheets by me in The BMJ, which for some crazy reason had stopped calling itself the British Medical Journal. “The purpose of my grading sheet observations,” he said, “was not, could not have been, nor was it intended to conclude, the final diagnostic assignment of colitis.”

  Wakefield stood his ground. He denied any error. But his reporting from the ileum was also strange. The lymphoid hyperplasia was considered off-topic for the disciplinary hearing and didn’t figure much in the binders. So I headed east on Euston Road to the British Library’s science section and reviewed a sample of ten papers and book chapters on this topic, which revealed a truth left hidden.

  Ugly as they might look to parents on a monitor, the swollen glands were regarded by gastroenterologists as a “normal” or “benign” observation. They were like tonsil tissue, components of the immune system, in places clumping together in “coalescing masses” as so-called “Peyer’s patches.” Their total numbers varied, both by age and location, being most numerous in childhood and in the terminal ileum—right by that valve from the colon.

  “They seem to be present in the majority of children,” specialists from Buffalo, New York, published, for example, in the journal Gastroenterology in August 1980, with nothing to do with autism or vaccines, “and are now being appreciated clinically with greater frequency because both radiographic and colonoscopic techniques and equipment have improved.”

 
Walker-Smith, of course, knew all about this. In 1983, he’d reported the swollen glands in the terminal ileum (of neurotypical kids) as having been termed “benign lymphoid hyperplasia” due to what he called “the frequency of its demonstration in asymptomatic children.” And, nasty as they appeared to worried laypeople, in March 1994 he edited a textbook where two experts explained:

  This is so common as to be a normal variant in children.

  Wakefield, Walker-Smith, and Murch, however, revealed nothing of this background in The Lancet. Although space was cleared in the paper’s final “Discussion” section for sixteen lines on the stoned rodent model, thirteen for Ms. Two’s vitamin B12 notion, and about forty-five trying to pin autism on MMR, there were none that discussed the lymphoid hyperplasia. There wasn’t even one reference in the “References.”

  These omissions were extraordinary. An oversight? Unlikely. This wasn’t merely the first clause in the paper’s title, but a sign that defined the syndrome. And, as ever, there was more to be noted from the records. Not only was the paper silent on the lymphoid hyperplasia, but the gastroenterologists didn’t disclose that standard blood tests to check for inflammation were also found to be normal.

  And there was more withholding of information. The paper included nothing—not one word—on the children’s principal gastroenterological symptom.

  What symptom was that? If it was the symptom of a syndrome, then that syndrome might literally be shit. As I sat by the door, watching the relentless flop of binders, I couldn’t fail to miss it—month after month—in records for ten of the children. “Marked constipation,” “Severe constipation,” “Fecal impacted,” “Significant constipation,” “Chronic constipation,” “Episodes of constipation,” “His major problem is constipation.” And on it went.

  “We were realizing that constipation is a central aspect of these children,” Walker-Smith acknowledged to the panel in July 2008, replying from the witness chair to one of his three lawyers, who’d wisely confronted this in advance of the prosecution. “Constipation,” the Australian professor added to what by then was obvious to everyone, “is an integral and fundamental part of the clinical features.”