The Doctor Who Fooled the World Page 5

  Under a template doctors dubbed the “Wakefield protocol,” each child would be admitted on a Sunday afternoon and discharged the following Friday. In the meantime, they’d undergo a daunting regime, including sedation or general anesthesia; magnetic resonance imaging brain scans; wires-to-the-head electroencephalograms; blood and urine tests; lumber punctures to draw cerebrospinal fluid; barium drinks and abdominal x-rays; a radioactive Schilling test for vitamin B12 absorption; plus, most crucially, a colonoscopy with ileoscopy (often compressed into the term “ileocolonoscopy”), intubation to the small intestine.

  No hospital had ever embarked on such a project. The management described it as “unique.” With a speculative premise concerning measles in vaccines, even to perform a colonoscopy for developmental issues was an exceedingly unconventional approach. Senior doctors questioned how any ethical review could have approved such a problematic venture.

  “In our research planning meetings, we had all these referrals,” explains Simon Murch, a consultant pediatrician who transferred from Barts with Walker-Smith’s team, discussing it with me later in the school. “And so that was prospectively planned research to a defined number of children, just in terms of assessing the limits of what we’re having.”

  To begin, the kids’ parents needed referral letters from local doctors: the only route to non-emergency admission. The first was solicited, in February 1996, from a general practitioner on the outskirts of Liverpool, two hundred miles northwest of London. “Thank you for asking to see this young boy,” she wrote to Walker-Smith of a six-year-old patient, “who developed behavioural problems of an autistic nature, severe constipation and learning difficulties after MMR vaccination.”

  That start was promising, and before long the Royal Free would become the Mecca, or Lourdes, for desperately questing families of developmentally challenged children. As one mother wrote of Wakefield, before any were admitted:

  He said that there is a test which [my son] could have which will either connect or eliminate his condition to the measles vaccination.

  What parent in her shoes wouldn’t say yes if the ordeal might glean that information? So they traveled to Hampstead by road, rail, and air, including from the United States. Nor did Wakefield forget his sentinel case. Notwithstanding Walker-Smith’s belief that the boy didn’t have Crohn’s, this child would be “pivotal” (to use the professor’s term) and among the first to undergo the procedures.

  In fact, he was second (hence “Child Two”), after his mother phoned Walker-Smith in May of that year and entered her son for the protocol. Wakefield backed her, putting an argument to the professor that, whether or not the boy had Crohn’s, his bowel might still have some “subtle” inflammation, and so benefit from colonoscopy, or “scoping.”

  Walker-Smith agreed and saw the mother and child again at a Friday food allergy clinic. He ordered blood tests for inflammation (which came back normal), and two months later—on the afternoon of Sunday, September 1—admitted Child Two to Malcolm Ward.

  This was five weeks after Child One had been and gone: a three-year-old boy ferried one hundred miles from an air force base, but who proved a disappointment to doctors. Even after a strong laxative “bowel prep” drink, he was so rock solid with constipation that the endoscopist couldn’t reach his small intestine—even failing again, three days later.

  Next, Ms. Two’s son was processed in accordance with the protocol. Upon arriving at the ward on the hospital’s sixth floor, a junior doctor, David Casson, took the child’s history from the mother, and a link with vaccination was noted.

  Mum does recount that at 13 months of age he had had his MMR immunisation, and 2 weeks following this had started with head banging behaviour and screaming throughout the night.

  She said the same to a child psychiatrist, Mark Berelowitz, who supported young patients on the wards.

  [Ms. Two] reiterated that [Child Two] started head-banging about 2 weeks after the MMR and hasn’t looked right since.

  The morning after the boy’s arrival, he was trolleyed to the endoscopy suite, four floors above Malcolm Ward. And, as midazolam and pethidine sedation kicked in, he was rolled onto his left side to be scoped.

  According to ethical codes, the procedure was “high risk,” but much of Walker-Smith’s career had mirrored the evolution of flexible fiber-optic endoscopes sufficiently delicate to use on children. This didn’t always pan out, though, and after the initial admissions to the Wakefield protocol, a five-year-old’s bowel would be perforated in twelve places, prompting a half million pound settlement by the hospital.

  To reach the lattermost portion of the small intestine (where only a few centimeters are accessible to scoping), the instrument has distance to travel. It must first pass the rectum and the slightly S-shaped sigmoid colon, then journey up the descending colon, on the left side of the body, to a bend: the splenic flexure. There it turns across the transverse colon, which sags horizontally behind the rib cage, to another bend: the hepatic flexure. Now on the right side of the body, it turns again, into the ascending colon, then down to the cecum (about three fingers from the hip bone) where the dead-end appendix branches off.

  Now came an even trickier maneuver: at the ileocecal valve. This is where the large bowel (a.k.a. the colon, or large intestine; the job of which is mainly removing water from feces) transitions to the ileum—the first stretch of the small bowel—where nutrients from food are absorbed. Here is the stretch that takes up vitamin B12, and where Crohn’s most typically does its worst.

  Generally, Walker-Smith ordered the procedure. But he didn’t scope children himself. For Child Two it was Murch who navigated the route, observing progress via a video monitor mounted on a rack at face height in the endoscopy suite. Murch had recently turned forty and, like his colleagues, was a gentleman possessed of the grand manner. His hobby was rowing, and he was proud to explain that he could successfully intubate a child’s small intestine on nine attempts in ten.

  Murch assumed the position, with his shirt and tie safe behind a green disposable plastic apron, and was ready to scope Child Two. With hands snugly gloved in skintight cream latex, his left clutched the controls, and his right the body of a Fujinon pediatric colonoscope. This was about one and a half meters long, and ten to twelve millimeters in diameter, built of steel mesh wrapped in smooth polymer.

  Embedded throughout the instrument were “angulation wires” to steer its head like a snake. Under the doctor’s gentle pressure, it traveled glistening pink corridors, scored with arteries and veins, inside the unconscious boy (now aged eight). At the front peered a lens, with a light source, air blower, and water supply, as well as channels for suction and tools.

  To Murch’s right stood two nurses. Watching the monitor from behind the participants was Ms. Two and Wakefield, and also nearby, a fair-haired young scientist named Nick Chadwick. He was the “coordinating investigator—molecular studies,” waiting for tissue to take away and test for measles.

  Upon reaching the valve, Murch felt relief. This was where he’d been blocked with Child One. And, with a final maneuver of twisting and pushing, the scope blazed into the ileum of the sentinel case, like a torch into Pharaoh’s tomb. Here was the goal: the repository of treasure. At least, so Wakefield hoped.

  I guess we’ll never know his reaction to what they saw. But watching on the monitor, Ms. Two felt horror as the instrument reached its limit. In the light of the scope, patches of nodules glistened: pale and swollen, protruding through mucosa. They looked vile, malignant, wrong.

  She’d never seen, nor heard of, anything like this. She felt shock, and more: vindication. “The doctors said these were evidence of inflammatory bowel disease,” she told Lorraine Fraser, the Mail on Sunday newspaper’s medical correspondent, who, two and a half years before, had also reported the launch of Jackie Fletcher’s JABS group. “I felt such relief. At last we had found what we knew to be there.”


  Crocodile-jawed forceps stretched from the head of the snake and bit off a tiny chunk of flesh. Then the scope retreated, snatching five more—from the cecum, ascending colon, transverse colon, descending colon, and rectum—which would be cut into pairs for analysis. One set was dispatched, fixed in formalin preservative, to the histopathology department on the hospital’s second floor, where it would be sliced, mounted on slides, and stained for study under a microscope. The other went with Chadwick to a tenth-floor lab to be frozen in liquid nitrogen at minus 70°C and probed for any fingerprint of the virus.

  More tests followed over the rest of the week. Trolleyed back and forth from Malcolm Ward, Child Two would undergo the lumbar puncture, MRI brain scan, B12 investigation, electroencephalogram, blood and urine tests, and so forth.

  All of these procedures yielded normal results. But the hospital’s pathologists, studying Child Two’s biopsies, reported subtle signs of inflammation. Their craft was “histology” (the microscopic study of tissues), which in this case would be reviewed, and reviewed, and reviewed, as Wakefield’s career rose, and fell.

  “The mild patchy generalised increase in inflammatory cells with lymphoid aggregates and follicles is not very specific,” the pathologists reported, three days after the scoping, “but could be in keeping with low grade quiescent inflammatory bowel disease.”

  Another eureka? Wakefield’s team thought so. Marrying that finding with the swollen glands, the provisional diagnosis from Walker-Smith was Crohn’s. It would seem that they’d found what they were looking for.

  Crohn’s in an eight-year-old. A somber diagnosis. The outlook would likely be bleak. Not only would Child Two struggle with developmental issues, but his guts would likely burn and blister. Regarded as lifelong (characterized by spells of remission and relapse), Crohn’s most often required long-term hardcore drug therapy and repeated rounds of surgery.

  How would a profoundly autistic person cope with that? And the prognosis was sometimes worse. Crohn’s also raised the risk of a host of other conditions, including depression, arthritis, eye diseases, and cancer. Some treatments caused bones to become brittle.

  But Ms. Two later tells me—her impression, not mine—that the professor couldn’t disguise his excitement. “He skipped into that room like a two-year-old,” she says of Walker-Smith’s visit to Malcolm Ward to break news that her child might have Crohn’s disease. She says he said, “Mrs. [Two], you were right.”

  FIVE

  Child Four

  Years later, an American group, Moms on a Mission for Autism, seized a chance to interrogate Wakefield. His favorite movie? Doctor Zhivago. His favorite actor? Jack Nicholson. His favorite song? “Your Tiny Hand is Frozen.” And the “song that reminds you of the happiest time in your life?” Andrea Bocelli sings “Con Te Partirò.”

  The latter was an oily pop operatic: lush with strings and sweeping cadence. Four minutes. Romantic. With a tune you could whistle. Translated, “With You I’ll Leave.” Bocelli, a tenor, first sang it publicly in February 1995 at a festival in Sanremo, northern Italy. Then it took off majorly over the next two years, bastardized under the title “Time to Say Goodbye” (breaking German sales records in February 1997) as a duet with a midmarket soprano.

  That dubs the soundtrack of as good as it gets to the time of Wakefield’s pilot study. This was the project that was to make his name, and would later enter his profession’s annals of shame as among the most unethical, dishonest, and damaging medical research to be unmasked in living memory.

  A dozen children were scoped for it—numbered 1 to 12—with the results to be published in The Lancet. The first was admitted in July 1996, and the last the following February. They were aged between two and a half and nine and a half years. Eleven were boys. All were white. Nine came from England; one from Wales; one from the British island of Jersey, near France; and one from the Bay Area of California.

  All were rendered unconscious, scoped, and tested for evidence of measles virus in their guts.

  By this time, the Wakefields had moved house again: to 43 Taylor Avenue, Kew. This was a prosperous, leafy, west London neighborhood made famous by Kew Gardens, a renowned botanic park, under the flightpath into Heathrow Airport. With his wife, Carmel, he snagged a six-bedroom, three-bathroom interwar villa for themselves and now a brood of three young children: the latest, Imogen Marie.

  Child Two would forever be the sentinel case. But the best at that time was another little boy, whose mother approached Wakefield in April 1996, three months before the first was scoped. He was nine years old, from a town in Tyneside—a region once famous for coalfields and shipyards—280 miles north of Hampstead. He was the next big catch: yielding what Wakefield would describe as the “most compelling case history” of vaccine damage.

  I’ll call him “Child Four,” and his mother “Ms. Four,” who, writing on three pages of flower-patterned notepaper, requested information about the research.

  Dear Dr Wakefield

  I was advised by Jackie Fletcher the JABS coordinator to contact you. I have a son [Child Four] aged 9 who is diagnosed Autistic. Recently I have been to see [a lawyer] in Newcastle as I believe the measles injection and the MMR injection may be responsible for my son’s condition.

  In a small, neat script, Ms. Four summarized the story before concluding with the purpose of her approach.

  Could you tell me what you think of all this and whether there are any tests [my son] can have to help in confirming that the injections may have caused his problems?

  Those problems were many, and of a similar severity to those of Child Two’s. But, unlike the happily born Cambridgeshire boy, Child Four had struggled from the start. His mother’s womb was unusual—so-called “bicornate”—where the uterus is heart- or Y-shaped. Following a pregnancy five weeks short of average, her son presented, not headfirst, but in the trickier breech position. And, although Ms. Four recalled that a C-section was proposed, no doctor was available to perform one. Concern was then raised about the baby’s features, and it was later discovered that a gene commonly associated with learning challenges, Fragile X, had “a very small deletion” of unknown import.

  “It was a terrible birth,” she says when we meet years later, after she emails me offering help.

  I should have done this years ago but at the time I was stressed with other things to do with my sons care and I was loyal to Dr Wakefield as I believed at the time he was right and telling the truth.

  She was a lightly built woman, a residential home assistant, who, after a two-year course in preschool social care, had for sixteen years worked in mental health and disability. Straight off I liked her style. We meet in a bar at Newcastle train station, where she arrives in black leather, clutching a metal-studded handbag, like she’d skipped off the back of a motorbike.

  But, as she talks of her first child—in the warm “Geordie” accent of the English northeast—I can’t imagine the wind in her hair. “My son progressively regressed from being a happy, normal little boy, to slowing down, to losing every single skill,” she says. “The only skill he had left in the end was—which he still has—is using a spoon.”

  Child Four, she recalls, had initially learned about a dozen words, before, at the age of approximately fifteen or sixteen months, his development slowed, then plateaued. Until he was four, however, he still played with toys and had yet to adopt the repetitive behaviors that often helped to define childhood autism.

  Somewhere between four and four and a half years, she says, he disappeared into a world of his own. “He just started banging his head off the wall, running backwards and forwards,” she tells me. “He didn’t know who I was anymore. He started making little noises. Just everything went. He didn’t have any skills, like. He couldn’t do anything anymore. He couldn’t play. He was playing with cars and garages and things when he was two years old. All that went. You couldn’t hold him anymor
e. You couldn’t do anything.”

  Her life was shattered. She’d no explanation. And that of the boy’s father was devastating. “He blamed me,” she volunteers of a partner in such pain that he upped and walked away from his family. “He actually blamed me. Thinking it was something to do with me.”

  Unlike Ms. Two, she didn’t claim to have answers. Like most parents, I found, who fell into Wakefield’s orbit, she relied on him to tell her. “I hadn’t thought about the MMR,” she says of the time when her son’s issues had first arisen. But, five months after Newsnight, she did. The occasion was a visit to a community center, where she spotted a local newspaper clipping, pinned to a noticeboard, headlined:

  Jabs safety fear folk flood hotline

  It gave the phone number of a local mother from Fletcher’s group, explained that this mother’s son had regressed after a shot, and named a lawyer, one Richard Barr.

  “There was a story on the board,” Ms. Four remembers of the moment she first suspected the three-in-one, when her son was eight years old. “It was basically the same as [my boy’s] story. They had been totally normal, had regressed, with loss of skills, and everything.”

  She phoned the number on the clipping and, months later, wrote the letter introducing herself to Wakefield. Ten days after she posted it—and to her surprise—he phoned her at home, and they talked. She minuted the conversation at the time, in blue ink, later giving me a copy of what she wrote.

  He told me to ring him or write in 3–4 months as he is now recruiting people to do research into bowel problems caused by measles & that it will show up if measles injection caused it so I can get legal aid.

  Child Four, she told him, had no significant bowel issues, except (if she let her son have fruit juice or yogurt) an occasional bout of diarrhea.

  But, what made Child Four’s case so compelling to Wakefield was an oddity in his medical history. He was born in January 1987, more than twenty months before MMR was launched. Although the triple shot was first licensed in the United States in 1971, it didn’t reach Britain until October 1988. So, at fifteen months, the boy received a single measles shot (which had been around in the UK since at least 1968) and then the three-in-one at four years and one month.