Included among the first batch of Omnibus cases was that of Michelle Cedillo, a severally autistic girl from Yuma, Arizona. Michelle was born on August 30, 1994, the first child of Theresa and Michael Cedillo. “Michelle was a happy, robust baby, very loving,” Theresa would testify later. “Everything about her was normal, her sleeping habits, her play habits.” From the moment she returned from the hospital, Michelle was lavished with attention. “We took her everywhere,” Theresa said. “We took her to lunch with us, she went to church with us, to the park, to the grocery store. You know, she was on regular outings, to visit family and family gatherings. She was happy. She ate normal. . . . She was a happy, well baby.”
On December 20, 1995, when she was sixteen months old, Michelle received her first dose of MMR vaccine. A week later, she came down with a fever that approached 106 degrees. Michelle’s pediatrician told the Cedillos that their daughter likely had the flu—there was a bug going around Yuma at the time—and prescribed a round of antibiotics. Michelle’s diarrhea persisted for a period, but her physical symptoms seemed to have cleared up by the time of her regularly scheduled eighteen-month wellness checkup two months later. By that point, however, there was another concern: In Michelle’s chart that day, her pediatrician noted that she seemed to be “talking less since ill in Jan.”
Michelle’s next visit to the doctor came in April 1997, when she was almost three years old. This time, her doctor told the Cedillos it was highly possible that Michelle had a cognitive disorder. The following month, Michelle saw a neurologist, who wrote in his notes, “It would appear that there was some neurological harm done at the time of the fevers. Whether this was a post-immunization phenomenon or a separate occurrence, would be very difficult to say.” Two months after that, a developmental psychologist gave the Cedillos an official diagnosis: Michelle had severe autism and profound mental retardation, and at some point in the near future she’d likely need to be institutionalized.
At the time, the Cedillos had only a vague sense of what autism was. “We were completely overwhelmed and devastated by hearing that,” Theresa said. Yuma is a city of fewer than 100,000 people located less than forty miles north of the Mexican border in southwestern Arizona, and it had few resources for autistic children or their families. There were no specialists who had experience with the disease and no network of families the Cedillos could turn to for support and advice. Desperate for information, Theresa Cedillo began to scour the Internet, where she came upon the story of Cindy Goldenberg, a clairvoyant who trains people to “incorporate life skills that lead to personal empowerment, shows how we can connect with a Higher Consciousness and Universal Sources, and demonstrates that we are always surrounded by a Divine Team.” In the early 1990s, after learning that her son, Garrett, was autistic, Goldenberg began a multiyear quest that led her to conclude that the rubella component of the MMR vaccine had caused Garrett’s illness by damaging his immune system and inflicting an “insult to the brain.”
Goldenberg contacted more than four dozen physicians about her theory before she found Sudhir Gupta, an immunologist at the University of California, Irvine. Using Goldenberg’s theories and Gupta’s medical training, the unlikely duo proposed treating autism with a procedure called intravenous immunoglobulin (IVIG), during which the combined blood plasma of hundreds, and sometimes thousands, of donors is injected directly into the bloodstream. Because of its potential side effects, which run the gamut from fevers to meningitis, as well as the low risk of contracting a blood-borne disease, IVIG is for the most part used only to treat immune disorders and potentially lethal infections. Despite the fact that Irvine, a wealthy enclave in Southern California’s Orange County, is a six-hour drive from Yuma, the Cedillos immediately called Gupta to schedule an appointment. After examining Michelle, Gupta told the Cedillos their instincts had been correct: Their daughter did have an “abnormal immune response.” Unfortunately, he said, she was not a candidate for IVIG.
That setback did not deter the Cedillos; if anything, Theresa’s discovery that there was an online community of families devoted to nontraditional treatments made her more determined than ever to figure out some way to help her daughter. As the months went on, Theresa connected with more parents and learned more about the dangers of vaccines. By the fall of 1998, when Theresa first heard about Andrew Wakefield’s theories, the Cedillos had become convinced that Michelle’s illness had been triggered by her first dose of the MMR vaccine.
That December, they filed a claim in the Vaccine Court alleging that Michelle’s condition was the result of a post-vaccination brain injury. Since brain injuries (or encephalopathies) were considered table injuries for the MMR vaccine, all the Cedillos had to do to win their claim was demonstrate that the first indications of Michelle’s disease occurred between five and fifteen days after she received the vaccine. It’s impossible to predict what will happen in a court of law, but this seemed to be precisely the type of situation in which there was enough circumstantial evidence to make the family the beneficiary of the Vaccine Court’s relaxed standards: The timing of Michelle’s post-vaccination fever corresponded closely enough with her neurological deterioration that, in the eyes of the Special Masters, there likely would not have been many questions to ask.
What’s more, while the Special Masters are not permitted to base their rulings on sympathy, it would have been hard for anyone to hear the Cedillos’ story without being moved. In the months and years after Michelle’s initial diagnosis, her condition only seemed to grow more nightmarish. In addition to her mental limitations, she suffered from a range of excruciating gastrointestinal ailments, which were all the more difficult to treat because of her inability to communicate. She alternated between bouts of extreme diarrhea and debilitating constipation. Her tendency to strike herself in the chest was, according to one doctor, potentially an attempt to attack the pain she was experiencing. There were times when Michelle’s anguish grew so intense that she’d stay up for twelve or eighteen hours at a stretch, sleep for two or three hours, and then start the cycle again. During other periods, her body produced so much saliva that she’d spend hours alternately spitting into and licking her hands. Worst of all were the stretches as long as three days at a time when she’d stop eating altogether. Eventually, her malnourishment became so extreme that she developed discolorations over her entire body and had to have a feeding tube permanently installed. By that point, Michelle needed two people to attend to her at all times: one to care for her while the other prepared her medications, and both working together whenever her diaper needed to be changed. Whether or not a vaccine had actually caused Michelle’s autism, the Cedillos seemed clearly not to be a family abusing the system with the hope of a payday.
By 2000, caring for Michelle had taken over the Cedillos’ lives. Preparing for each of the many trips they took to the children’s hospitals in San Diego and Phoenix was an ordeal in itself: First, the Cedillos shipped ahead Michelle’s favorite toys; then, they packed her feeding pump, food, medications, and syringes; finally, on the advice of a physician, they sedated her to ensure she’d be able to fly without incident. As Michelle’s condition deteriorated the Cedillos found that, like their daughter, they were growing more isolated from the world around them. They had taken Michelle to church with them when she was an infant—along with “baby,” “mama,” and “daddy,” one of her first words was “Jesus”—but they stopped after it became impossible to bring her without “causing a commotion.” Even something as simple as going out to lunch became more trouble than it was worth. “We tried. We made several attempts, but eventually we stopped,” said Theresa. “It was too upsetting, for her, for the people in the restaurant, for us. So we stopped.”
This is a common scenario even for parents with children on the milder end of the autism spectrum. “It makes people uncomfortable,” says Jane Johnson, who is the managing director of the Autism Research Institute and is a member of the family whose ancestors founded the multinationa
l pharmaceutical and medical devices company Johnson & Johnson. “Particularly for women, many of our friends are based around child rearing. . . . If you’re sitting there with your neurotypical child and your friend Suzy is there with her autistic child, you’re going to feel really uncomfortable when your child is running up and saying, ‘Mommy, mommy, I just went down the slide’—and Suzy’s child can’t speak. You’re going to cringe if you’re a sensitive person with every word that comes out of your child’s mouth, knowing how Suzy doesn’t get those same experiences. I suppose they don’t know what to say.”
The combination of the isolation and exhaustion experienced by the Cedillos undoubtedly led to periods during which they questioned the commitment they’d made to each other in the days after Michelle’s initial diagnosis: “We both agreed that we didn’t ever want to . . . put her away somewhere,” Theresa Cedillo said. “We both decided that we would try to concentrate on finding out what was wrong and more about what her diagnosis was and to see what form of help we could get for her.” Time after time, all that love and attention seemed to be for naught, as another new therapy or experimental protocol proved to be no more effective than the ones the Cedillos had already tried.
Then, in 2001, Theresa Cedillo went to the annual Autism Research Institute/Defeat Autism Now! conference in San Diego. The experience was revelatory: She heard about children who sounded just like Michelle—and who’d been cured. “I heard several presentations by several doctors describing Michelle to a T with her—the regression, her bowel problems, how her bowel problems had persisted and what was wrong,” she said. One of those doctors was Andrew Wakefield. By that point, the Cedillos had already endured four years of people telling them that they couldn’t help Michelle—and that they doubted anyone else would be able to help her either. Wakefield, on the other hand, was anything but discouraging: He suggested that Michelle have a pediatric gastroenterologist perform an endoscopy, which is an invasive surgical procedure during which a fiber-optic camera is threaded up the rectum or down the mouth and through the maze of the gastrointestinal tract. “He gave me the information that I need to—medically speaking, what I needed to tell the gastroenterologist to see if he was willing to do that,” Theresa said. (Many doctors are reluctant to perform endoscopies on children because the procedure puts patients at risk of punctured organs, deadly infections, and all the potential complications that accompany anesthesia.)
Less than three months later, the Cedillos sent a biopsy of Michelle’s gut tissue to Unigenetics, a lab in Dublin, Ireland, that had been founded in the late 1990s in consultation with Wakefield for the purpose of testing tissue samples for U.K. MMR litigation. More recently, the lab had become popular among American families involved in vaccine-related lawsuits. “[We wanted] to determine if she had measles RNA in her colon,” Theresa said later when asked why she and her husband had Michelle’s tissue samples tested at a facility more than five thousand miles away from their home. “I think I found it online. . . . I can’t remember where I first heard of Unigenetics, but I did hear directly from another parent to send it there.”
Between the spring of 1998 and the end of 2001, the series of events that culminated in Theresa Cedillo’s one-on-one encounter with Andrew Wakefield were repeated hundreds of times around the country, often with similar results. After almost every one of his speeches, a line of parents waited to tell Wakefield about their children. At times, he seemed to respond to the adulation in ways that were more reminiscent of a miracle healer than a clinician. During a conference in the fall of 1999, Liz Birt brought her five-and-a-half-year-old son, Matthew, to Wakefield’s hotel room. Wakefield looked at the child and placed a hand on his stomach. “I think we could help him,” he said. Two months later, the Birts were on their way to London for treatment at the hospital at which Wakefield worked. The more Wakefield’s warnings about the connection between vaccines and autism were derided by mainstream organizations, the more his work took on the aura of samizdat—and the more he was treated as a savior incapable of doing wrong. On March 20, 1999, at a conference in California, Wakefield described for his audibly amused audience how he relied on his young son’s schoolmates to obtain blood samples for his research:
This is again my son’s birthday party, so these are your perfect controls. So we lined them up—with informed parental consent of course; they all get paid £5, which doesn’t translate into many dollars, I’m afraid—and they put their arms out with a cuff on and have the blood taken. It’s all entirely voluntary. (Audience laughs.) And, uh, when we did this at the party two children fainted and one threw up over his mother. (More laughter.) Listen, we live in a market economy. Next year they’ll want £10. (More laughter.) We have a birthday party coming up as well when I get back, so we’re going—they charge me a fortune. Urine, I mean, come on—they charge me a fortune. They were all less than ten years of age.
At about the same time that Wakefield was joking about bloodletting at his son’s birthday party, Vicky Debold, a nurse, was beginning to notice things in her son, Sam, that would eventually lead her to request her own consultation with Wakefield. Sam Debold was born in 1997, and for the first year of his life, Vicky says, he developed normally. After that, however, he was stricken with a series of escalating health problems. First, Vicky says, he lost interest in learning how to walk. Next came severe diarrhea. Eventually, he stopped being curious about the people around him. “He had always been very social, happy and bright-eyed, loved playing patty cake and stuff like that,” Vicky says. “Then he just wasn’t all that interested. When you tried to redirect him and get him involved in something other than what he was doing, which was typically just sitting on the floor lining stuff up, he would get upset.”
Shortly before Sam’s third birthday, a developmental pediatrician diagnosed him with autism. That his parents were already somewhat familiar with the disorder did not make the diagnosis any less painful than it had been for Michael and Theresa Cedillo: According to his doctor, Sam was so severely ill it was possible he, too, would end up in an institution. If the Debolds had any further questions about what the future held in store, the doctor said, they should consult a book titled The World of the Autistic Child by a psychologist named Bryna Siegel, which warned parents against maintaining a belief, “on an irrational, unconscious level, that there is a normal little person inside the autistic exterior, struggling to emerge whole.” “It’s the most depressing book I’ve ever read in my life,” Vicky says. “I swear, if you’re a parent and you read that you want to kill yourself. . . . The future is nothing but bleak.” Even the parents Vicky met through local support groups seemed resigned to their fates. “They had older children,” she says. “They were pretty—happy is not the right word. There wasn’t—they were past the shock, the anger, the ‘Why aren’t we doing more about this’ phase.”
Vicky, on the other hand, was still confused and upset. As time went on, she also grew increasingly frustrated with Sam’s doctor, whose counsel had been limited largely to warnings about what not to do: “You’re an educated person,” he’d told her during an appointment. “You and your husband know better than to get on the Internet.” What was it, she wondered, that he didn’t want her to see? Having seemingly exhausted all her other options, Vicky figured it was time to find out. Some of the first things she encountered when she looked online were the simmering controversy regarding mercury in vaccines and Wakefield’s theories regarding the MMR vaccine. “I thought, This guy doesn’t seem completely crazy,” she says. “He’s published in really good, peer-reviewed journals.” Then, she says, she read that Wakefield, along with Bernard Rimland and Barbara Loe Fisher, was scheduled to speak at an upcoming Parents for Vaccine Awareness conference in Erie, Pennsylvania, close to where she lived.
Debold went to Erie to hear Wakefield’s presentation, and when it was over, she approached him with the intention of telling him about her son. Before she could begin speaking, she began to sob. “Andy said, ‘Look,
let’s calm down here,’ ” Vicky says. “ ‘First thing we need to do is, he needs to get a regular X-ray of his abdomen. He needs to be evaluated by a gastroenterologist, you need to check this and this and this, and if those things are all negative, you probably need a colonoscopy.’ It was the first time any physician thought there was any merit to all of Sam’s diarrhea and his weight loss. I’m sitting there going, this is so common sense. This should have been done a long time ago. Nobody paid any attention to this.”
The depth of gratitude felt by many parents at Wakefield’s suggestion that there might be effective treatment for their children was often enough to cause them to overlook ways in which his interests might not have been perfectly aligned with theirs. During the precise time he was becoming a hero in America, Wakefield was on the verge of disgrace in the U.K., where there was growing concern over what was perceived as his liberal attitude toward scoping children. In December 2001, after a series of disagreements with his superiors, Wakefield was asked to leave the Royal Free Hospital, where he’d been based for the previous fourteen years. “Dr Wakefield’s research was no longer in line with the department of medicine’s research strategy,” a statement released by the hospital read. “He left the university by mutual agreement.”
The Panic Virus Page 20
