Showing off his spacious rambler on Bainbridge Island, perched just above Puget Sound, Michael Belkin seems in many ways a typical affluent yet alternative-minded Northwesterner. As a self-employed financial analyst, he’s got a home office and flexible hours. In his kitchen, he greets his wife Lorna, a willowy portrait painter and stay-at-home mom who’s preparing a crustless quiche for a staff lunch at their kids’ private school, which encourages every child to fulfill his or her “unique destiny.”
Belkin rustles around and produces the health-conscious items he gives to his 10-year-old son, Sebastian, and 7-year-old daughter, Viola: fish oil, probiotic supplements, and so-called “perfect food,” made up of grasses and algae. Then he heads downstairs to a daylight basement that allows him to indulge his own creative side. Fifty-seven years old, with a spiky haircut and chunky dark glasses that give him the look of an older Ira Glass, Belkin spent 10 years in Los Angeles trying to make it as a guitarist and songwriter before heading to Wall Street, where he worked for a time at the investment bank Salomon Brothers.
Over the past year, he’s built a professional-quality recording studio, with top-notch digital equipment, foam insulation, and a vocal booth, on a little patio outside. From here, he’s been producing a CD by a band he’s put together, in which his son plays drums.
His completely unvaccinated son, it should be mentioned. Because the thing that makes Belkin unusual—although far less so than public-health officials would like—is that this suburban dad is a nationally known advocate for what he terms vaccine “choice” and what most others call the anti-vaccine movement.
He speaks at public events, posts news updates on a blog, and has written an essay for a just-released book called Vaccine Epidemic, which he’ll be signing at the end of this month at Bastyr Unviversity, the school of alternative medicine in Kenmore, just northeast of Seattle. Belkin sees his band, pointedly called the Refusers, as akin to the antiwar protest-music bands of the ’60s and ’70s. The group’s music combines a toe-tapping, funk-rock beat with lyrics meant to convey the Nazi-like horror—as he and his allies literally portray it—of this country’s vaccination policies. “Vaccine Gestapo” is the name of one song. In a music video for another, his daughter Viola (also completely unvaccinated) portrays a scared Alice-in-Wonderland figure being chased by a mad doctor wielding a needle.
The reason Belkin is so passionate on the subject can be discerned from yet another song, “Stole My Baby Away.” It’s about his infant daughter, Lyla, who died a day after receiving the Hepatitis B vaccine shot 13 years ago. He wails in the song: “That evening, she stopped breathing/Her face turned blue/Oh Lord, her face turned blue.”
It’s a story that resonates deeply with other parents suspicious of vaccines—and what they see as collusion between government and Big Pharma to force parents into immunization. “He’s experienced the ultimate sacrifice,” says J.B. Handley, the Portland-based founder of Generation Rescue, a prominent anti-vaccine group.
Like many stories in the anti-vaccine movement, though, Belkin’s is murkier than it may seem to true believers—and he doesn’t make it easy to verify crucial details. For that matter, the movement as a whole is based upon theories that are not only unproven but, in key respects, directly contradicted by the past decade of scientific research.
But the anti-vaccine movement is about more than science. It’s about the heartache of sick children, the norms of certain subcultures, and the debate over what the government can compel us to do for both our own health and that of the populace at large. And judging by the number of parents opting their children out of vaccinations, the movement is getting stronger. Nowhere is that more the case than in Washington state, which has become a battleground between pro- and anti-vaccine forces.
In 1998, a British physician named Andrew Wakefield published a paper suggesting a link between the combined measles/mumps/rubella vaccine, known as MMR, and autism. It was an “A-ha!” moment for the legions of vaccine skeptics who already blamed mass immunization for the country’s spiraling autism rate, as well as assorted other illnesses. That Wakefield was a respected doctor, publishing in the preeminent journal Lancet, demanded a response.
A chorus of scientific papers subsequently refuted the purported connection between MMR and autism. Meanwhile, a British journalist exposed financial ties between Wakefield and lawyers looking to sue vaccine manufacturers. Wakefield lost his license to practice medicine, saw Lancet retract his paper, and faced new accusations—published earlier this year by the British Medical Journal—that his research was fraudulent. (Representative of just how far his star has fallen, Wakefield’s most recent public appearance came during a rally last week in Dublin, Ireland, where he spoke alongside 9/11 Truthers and those who believe in a coming New World Order.)
Yet Wakefield, now living in Austin, Texas, is more revered than ever by vaccine skeptics, his vilification seen simply as more proof of a conspiracy. “As far as we’re concerned, Andrew Wakefield is a hero,” says Belkin’s wife Lorna. “He’s been lynched.”
Similarly, the anti-vaccine movement has only gained force as mainstream science keeps professing that there’s no rational reason to fear immunization.
Public-health officials fear a resurgence of diseases long since eradicated. That’s already happening with measles, which disappeared in this country in the late ’90s yet has been discovered in 118 patients nationwide this year—two of them in Washington state—of which the vast majority were unvaccinated, according to a CDC report released last month. Pertussis, more commonly known as whooping cough, is also on the rise. Last year, the state Department of Health recorded 608 cases, more than twice as many as in the year before. The tally included the deaths of two infants.
Consequently, legislators in Olympia, at the prodding of the state Department of Health, have just passed a bill that makes it harder for parents to exempt their children from school-vaccination mandates. No longer can they simply sign a form. They must now present a note from a doctor who has advised them of the dangers of failing to immunize.
As of the 2009–10 school year, only 6.2 percent of the state’s kindergarteners had gotten exemptions. That’s not a huge number, and those in favor of vaccination choice say it makes no sense that state officials have gotten so worked up about it. “There is no problem,” says Janelle Hall, state director of the mandate-opposing National Vaccine Information Center, who joined Belkin and several others in testifying against the bill.
But that exemption rate is the highest in the country, according to a CDC report released earlier this month, and more than double what it was a decade ago. What’s more, there are pockets around the state where the exemption rate is far higher.
“Yes, we have a problem,” says Edgar Marcuse, associate medical director of Seattle Children’s Hospital.
Marcuse, whose license plate reads DTAP IPV (the first four letters refer to the combination vaccine for diphtheria, tetanus, and pertussis, the last three to the polio vaccine), has been involved in immunization campaigns for more than 40 years—before many of the newest vaccines were even invented. “I can’t tell you how many times I had to tell parents ‘Yes, your child is going to survive, but your child has lost his hearing,’ ” says Marcuse, sitting in his office. Deafness was often a consequence of haemophilus meningitis, a disease once affecting 20,000 children nationally per year. “Today,” Marcuse says, “we see no disease due to the Hib vaccine.”
He opens a cabinet above his desk and pulls out several pictures of a former patient. They show a young boy, perhaps 4 or 5. His face is covered with red blisters that have turned into gaping holes—”so big you could stick a pen in them and it would stand straight up,” Marcuse says.
“What do you think it is?” he asks. The answer: chicken pox, for which there is now a vaccine that many parents question the need for. The child had a severe case, Marcuse admits, but not an extraordinary one.
A closer look at DOH data reveals the potent mix of demographics that makes vaccine resistance such a sturdy presence in the state. Some of the highest exemption rates are in eastern Washington, where any kind of government mandate—whether immunization or taxation—is often viewed with hostility.
At the opposite end of the political spectrum are the liberal enclaves of western Washington, which are also resistant to vaccines. At Vashon Island’s public elementary school, 25 percent of students have skipped at least one vaccine. At the Seattle Waldorf School, akin to the one the Belkins’ children attend, the number is a whopping 47 percent.
These schools are part of well-educated and affluent communities that one might think would be most likely to follow the recommendations of scientists and doctors. But in fact, as journalist Seth Mnookin points out in his new book The Panic Virus, they perfectly reflect the base of today’s anti-vaccine movement. Its constituents are part of what you might call the suburban counterculture—parenthood and affluence mixed with creative aspirations, a crunchy-chewy lifestyle, and an inclination to question authority.
The authority, in this case, is everyone from CDC doctors promoting vaccines to scientists allegedly tied to Big Pharma to schools that mandate immunization and, as Belkin frequently puts it, serve as the “marketing department” for vaccine companies.
In May 1999, Belkin, then living in New York City, went to Washington, D.C., to testify before a Congressional hearing looking into the safety of the Hepatitis B vaccine. He had already told Lyla’s story to the public once, on an episode of 20/20. But this was an even more prominent audience.
Wearing a suit and reading from a script he had prepared, Belkin presented his credentials, as he almost always does when marshalling his arguments about vaccines. “I’m trained in statistics,” he said, noting that he had previously worked at Salomon Brothers and was then “an advisor to some of the largest financial institutions in the world.” He said he had pored over a federal database of suspected adverse reactions from vaccines, and drawn the conclusion that “the CDC has been experimenting on babies like guinea pigs.”
His own 5-week-old Lyla, he said, had died about 15 hours after she received a booster shot of the Hepatitis B vaccine. “She was never ill before,” he said. But suddenly she turned fussy, fell asleep, and stopped breathing.
“The New York Medical Examiner ruled her death Sudden Infant Death Syndrome,” he continued. But he said that’s not what the examiner initially told him, his wife, and their pediatrician. And he apparently had the pediatrician’s notes to prove it. He quoted them: “brain swollen . . . not sure cause yet . . . could not see how recombinant vaccine could cause problem.”
In his essay for Vaccine Epidemic, Belkin offers more conspiratorial details. He writes that the examiner switched her story “after consulting with Merck,” the manufacturer of the Hepatitis B vaccine—the implication being that Merck didn’t want a swollen brain cited as a cause of death because doctors have acknowledged that condition as a rare but possible side effect of at least two vaccines, although not that of Hepatitis B. This same examiner, Belkin wrote, “was more concerned about examining our apartment for evidence of child abuse than about the possibility that a vaccine caused her [Lyla’s] death.”
Talking with Belkin in his Bainbridge Island home, it’s apparent that he doesn’t like to be questioned about his account. Easygoing and welcoming when he picks a visitor up from the ferry, he turns irritable when asked for a fuller version of events. “Going into details is very painful,” he says.
Yet it soon becomes even more apparent that there are a lot of unanswered questions about his portrayal of Lyla’s death and its aftermath. Asked, for instance, if he is sure that the medical examiner talked to Merck before switching her assessment of Lyla’s death, he says: “I think so. I told her to.” In other words, Belkin’s allegation is based on nothing more than his own suggestion to the examiner, prompted by his suspicions about the vaccine.
He’s also not sure, now that he’s asked about it, whether it was the examiner or, as seems more likely, the police who came to his apartment looking for evidence of child abuse. “I don’t know . . . somebody . . . don’t ask me,” he says.
Most crucially of all, Belkin says he doesn’t know where the pediatrician’s notes are that prove that the examiner initially determined that Lyla had a swollen brain. “You have to take my word for it,” he says.
Later, asked whether he would consent to having the case file from the examiner’s office released to Seattle Weekly, he declines. “To me, it’s a very invasive and intrusive request,” he says, questioning the Weekly‘s “fixation” with Lyla’s death. “To me, it’s not the story.”
Back in his home, Belkin is more keen to talk about a series of encounters he had after Lyla died that cemented his belief in a pro-vaccine conspiracy. “I got invited by the Rotary Club of New York City to talk about the risks of the Hepatitis B vaccine,” he says, beginning one such anecdote. “A guy stands up and disputes me.” Later, Belkin says he exchanged a few private words with the man, who turned out to be Louis Cooper, a physician who would go on to become president of the American Academy of Pediatrics. “A lady from Merck told me to come down here and refute you,” Belkin alleges Cooper told him.
Reached at his home in New York City, Cooper, now 79, says: “I think some Merck representative did mention to me that this event was going to take place.” He says he probably said as much to Belkin, not feeling he had anything to hide. “I listen to everybody,” he says, insisting that at the same time he is “scrupulously careful not to take money from government or industry.”
Cooper isn’t quite the enemy that Belkin considers him. He willingly concedes that science—in regard to vaccines or anything else—is always “incomplete.” He cites the example of the oral polio vaccine. Once considered safe, scientists subsequently discovered that it could actually cause polio. “We used to have five or 10 people every year in the U.S. who would get the vaccine and get polio,” says Cooper. The U.S. stopped using the vaccine in 2000, reverting to an injected version instead, but it is still used internationally.
Cooper also acknowledges that the measles vaccine may cause encephalitis (the medical term for a swollen brain) in perhaps one in some “hundreds of thousands” of cases. “It hasn’t been proven, but there may be a connection,” he says. And he notes that a rare defect in the brain, possessed by an estimated one person in a million, can cause a child who receives the pertussis vaccine to have seizures and possibly brain damage.
“Most of us don’t argue that vaccines can sometimes cause harm,” Cooper says. “It’s just a question of how often.”
As he sees it, the extreme rarity of severe side effects is far outweighed by the benefits of vaccines. “Of all the things I’ve seen in medicine, I don’t think anything has had a better record,” he says. “You can be sure my children were immunized, and my grandchildren.”
If Belkin truly has an archenemy, then, it’s probably Paul Offit, chief of the infectious-diseases division at the Children’s Hospital of Philadelphia and a co-developer of the rotavirus vaccine. Offit is a leading crusader against vaccine resistance, going on the attack in a number of books, including his latest: Deadly Choices: How the Anti-Vaccine Movement Threatens Us All.
In that book, Offit cites Belkin’s Congressional testimony and 20/20 appearance, but he doesn’t get it exactly right. He discusses Belkin’s “certainty that the Hepatitis B vaccine had caused his daughter’s SIDS,” only to refute that notion. Of course, Belkin’s claim is that Lyla died of encephalitis, not SIDS.
Belkin doesn’t mention this when he discusses being “trashed” by Offit in the book. But his enmity for Offit—and the poisonous feelings that generally pervade this debate—is clear. “He says babies can have 100,000 vaccines safely,” says Belkin. “I think he should be required to take 100,000 vaccines at once.”
Offit expresses some regret about his assertion: “People have the image of 100,000 needles sticking out of someone’s arm.” But he doesn’t back down. He says he was trying to respond to a central concern of the anti-vaccine movement—that the number of shots given to children has gotten out of hand.
“Too Many, Too Soon” is the slogan popularized by the anti-vaccine movement’s most public face: former Playboy model Jenny McCarthy, a mother of an autistic child and the president of Handley’s Generation Rescue. Whereas many of today’s parents received fewer than a dozen shots in their childhood, they are now advised to give their own children 30 of them before they’re 6 years old, not including an annual flu shot. (Many vaccines require multiple doses.)
According to Offit, that number shouldn’t be alarming. Whatever shock to the system a vaccine presents, it’s nothing compared to what the human body deals with every day—to be precise, the “100 trillion bacteria” that he says reside on our skin.
Belkin and his allies, however, aren’t buying such reasoning. For each study that comes out offering reassurance about vaccine safety, they find a million flaws. A recurring critique of Belkin’s is that scientists are not using real placebos when testing vaccines. “Guess what they’re using?” he asked the crowd at a vaccine “choice” rally last year in Chicago. “Other vaccines.”
Not true, says Offit, referring to 16 years of studies he conducted before the rotavirus vaccine was put on the market. However, the children who got placebos in his studies instead of the then-experimental vaccine also got the rest of their recommended shots. Offit, like his colleagues, says that to do otherwise—to undertake the kind of vaccinated-versus-completely unvaccinated study that the anti-vaccine movement wants— would be “unethical.”
If that movement finds the prevailing science unpersuasive, it also takes sustenance from a few researchers who are on its side. “Within the last year, some of the more important research has actually come out,” says Handley. It’s not mainstream science, he acknowledges, but he sees that as following a noble historical pattern: “a handful of courageous scientists” gradually bringing the truth to light.
Helen Ratajczak certainly fits that pattern, at least as far as being out of the mainstream. A retired scientist who, according to the resume she provided to Seattle Weekly, worked a seven-year stint at a pharmaceutical company, where she says she tested drugs but not vaccines, Ratajczak’s interest was piqued when her grandson was diagnosed with autism.
Thereby motivated to investigate a suspected, though never proven, vaccine link, she says she waited until retirement to go at it full-bore, so that she “didn’t have a job to lose.” Ratajczak’s highly unusual plan was to set up an independent lab, not affiliated with any institute or university. But so far her attempts to get funding have been unsuccessful—a grant application Ratajczak submitted to the National Institutes of Health three years ago was turned down—which helps explain the curious nature of the study she published in this January’s Journal of Immunotoxicology, only the second published study of which she’s been listed as primary author within the past decade.
Ratajczak’s speculative thesis—”increasing number of vaccines given at one time . . . could be a culprit” behind increasing autism rates—provided a hint that her study was less fact than theory. She says she published it to attract the attention of a benefactor: “I felt that if I wrote some review articles and got my name associated with autism [research], I could be funded.”
Yet anti-vaccine advocates like Belkin cited Ratajczak’s study as further proof of a connection to autism. He linked to it on his blog in April. In March, CBS News investigative reporter Sharyl Attkisson, already notorious among other journalists for her sympathetic reporting on vaccine skepticism, went so far as to say that Ratajczak’s scientific review—which offered no new research, only citations of controversial, long-debunked papers—reopened the autism-vaccine debate.
The real power of the anti-vaccine movement, though, lies not in science but in the stories of thousands of parents who believe their children were damaged by immunization. There’s Belkin’s story, of course, and Handley’s. A partner in a private equity fund, Handley says his now 8-year-old son was “developing normally until around month 13, when he got one of the largest doses of vaccines” and began showing autistic behaviors. Handley started Generation Rescue as a way of promoting controversial “biomedical” treatments for autism, which involve purging the body of toxins purportedly introduced by vaccines. He and many other parents of autistic children swear the treatments work. Mainstream doctors, who don’t link autism to toxins, shy away from them.
There’s also Kim Stagliano, a Connecticut mom who last year published All I Can Handle, a funny, moving memoir about her life with three autistic daughters. In a phone interview, Stagliano says she vaccinated only her two oldest children. By the time she got pregnant with her third, she was convinced that vaccines were harmful and determined to avoid putting yet another child at risk. Yet Bella, her youngest, now 10, never learned to speak—a hallmark of autism.
Stagliano searches for an explanation. Maybe the hospital ignored her instructions and vaccinated Bella anyway? “I can’t prove it,” she says of her suspicions about vaccines. Yet, she says, she and other parents can’t help but wonder “What if it’s true?”
Belkin points to a wealth of other stories that have been accumulated by the Vaccine Adverse Event Reporting System (a database maintained by the CDC and Food and Drug Administration) and the Vaccine Injury Compensation Program (run by a federal court). They describe everything from a “huge bruise” and fevers to seizure disorders and brain damage.
Vaccine proponents such as Offit insist those accounts prove nothing. Any parent or doctor can file a VAERS report without concrete evidence that vaccines were actually to blame for the illnesses described. And the compensation program does not require parents to establish causation in a scientific way. The program arose as a way to mollify parents while protecting vaccine companies from lawsuits, a dual mission that seems to satisfy no one.
But reading through the accounts could make any parent queasy.
To Vashon Island’s March Twisdale, it seems as if there is a huge government propaganda campaign to, as she puts it, “disappear” all these children so described. “One group wants to silence the minority,” she says. “Just shut up and do what you’re told.” That’s the message she says has come from a pro-vaccine campaign on Vashon Island—started, ironically, by one of her friends.
Vashon Island has about half as many people as Bainbridge—some 10,000—and is twice as remote, at least in its own psyche. “We’re the only island around here that doesn’t have a bridge to it,” says Leslie Brown, editor of the Vashon-Maury Island Beachcomber. “That sets us apart.”
Celina Yarkin, Twisdale’s friend, lives on Maury Island, an even more remote and pastoral locale which connects to the main island by a narrow strip of land and is generally considered part of Vashon. “I am so much a part of this community,” she says, standing on the 10-acre farm where she and her husband Joe raise produce to sell at farmers markets. Around her, chickens and a duck eat worms and otherwise prepare the soil according to organic farming methods. A couple hundred feet beyond her is the huge shipping container where the Yarkins lived while building their own house.
That was after the Yarkins, who met while riding the rails in their college days, moved here from New Mexico, where they lived in a “collective” with an anarchist bent. She recalls one of her housemates at the time, a new mom, reading an alarming story about vaccines in Mothering, a now online-only magazine that caters to the natural-living crowd.
Initially, Yarkin had some concerns as well, and delayed vaccinations for the first of her three daughters, now ages 11, 8, and 5. A few years ago, however, her concerns shifted in the other direction, after a BBC crew came to Vashon to film a documentary about the anti-vaccine movement, and wound up getting some background shots in her driveway. Intrigued, she delved into vaccination statistics on the island.
Yarkin found that exemption rates were so high that they likely compromised the island’s so-called “herd immunity,” which protects a populace at large. And she read up on the science of vaccination, which convinced her that immunization was far safer than the alternative.
“The first thing I did was to call a meeting,” she says. One call led to another, and before she knew it she had some of the area’s most prominent immunologists at the island’s high school, all of them excited that a genuine Vashon parent was on their side.
Among them was Bill Foege, a former CDC director who, while working in Africa and India in the ’70s, developed the immunization strategy that eradicated smallpox. He now works for the Bill and Melinda Gates Foundation, which is spearheading immunization campaigns all over the world and which this month announced funding for a vaccine-education campaign in this state. And Foege lives, of all places, on Vashon.
“This is fabulous. We’re so happy you’re doing this,” Yarkin said she was told, the operative word being “you.” “They didn’t have time to take it on.” So she did.
Walking over to a work shed, she hauls out a large plywood exhibit she made that charts the island’s rising exemption rates. She’s displayed the exhibit at the island’s schools and its farmers market. Today she loads it into her battered Toyota pickup and brings it to a health clinic, where she takes 5-year-old Madeline to get her latest round of shots.
Yarkin has coordinated her effort with Chautauqua Elementary School’s veteran nurse, Kate Packard, who couldn’t have been more ready for a pro-vaccination crusade. In her office, Packard recalls a pertussis outbreak in the mid-’90s, when Chautauqua’s “refrigerator was filled with antibiotics we were giving to children” and alarmed parents were writing to the Beachcomber. Yet after that scare died down, parents continued to opt their children out of the pertussis vaccine in ever-greater numbers.
“I’m tired of it,” says Packard, who is retiring this year. “I’m tired of saying ‘That’s your belief.’ ” Parents who believe vaccines are more harmful than the diseases they prevent, she says, “are wrong. They’re flat-out wrong. The diseases aren’t around anymore, so they have the luxury of looking at the minor issues caused by vaccines.”
Packard jumped into action when she received an e-mail from Yarkin containing a speech by Foege suggesting that parents who opt out of vaccines should have to sign a form about the risks of doing so, just as parents who do immunize have to sign forms about the risks of vaccines.
A few months ago, Packard created a handout that the school gives to parents who seek exemptions (although no signature is required). It tells parents that they are “able to make this choice because the risk of acquiring . . . diseases is reduced by the fact that other children have been immunized.” It also informs parents that their children present a risk to other children—and to pregnant women who in turn could pass diseases on to their vulnerable infants.
Packard says it’s uncertain whether the school will continue to use the form now that the state is requiring parents to be told similar things by a doctor. But it’s already sent a message—one Twisdale finds “highly offensive.” She says parents are being told “You’re basically this horrible person.”
In March, she wrote a letter to the Beachcomber to express her outrage about the form and an article that had run in the paper about the risk of another pertussis outbreak on the island. “Here come the typical propaganda methods!” wrote Twisdale. “Promote fear! Exaggerate vaccine effectiveness. And, most insidiously, an attempt to turn islanders against each other.”
Exhibit A might be her own friendship with Yarkin, which has been strained by their opposing stances. Their two-hour phone conversation on the subject left Yarkin, at least, feeling they were further apart than ever and wondering if there was any way to address this topic without polarizing islanders.
Twisdale is a part-time ballroom-dance instructor and former leader for La Leche League, the organization that urges mothers to breast-feed rather than use formula. She says she nursed her own until “they were many years old.” Now she home-schools her sons, 9 and 12, in a house surrounded by horses and chickens.
After finishing her lessons on a recent day and sending her kids to the library with their grandma, she notes that she is not unilaterally against vaccines. She immunized her sons against tetanus, for instance, which she believes is dangerous. Other diseases, however, she says, can be easily fought off by the body. Pertussis, for instance. Her son Román caught it when he was 3 and gave it to Twisdale, who was about seven months’ pregnant with Jordi.
That she got the disease despite having been immunized herself as a child is one reason she discounts the vaccine’s utility. (Public-health officials now urge adolescents and adults to get booster shots.) Another is that pertussis, by her estimation, “wasn’t that big of a deal—I coughed.” She and her son went on antibiotics and the disease went away—and the same happened when Jordi got whooping cough a year later, at 3 months. She says they all now have a natural immunity to the disease, which beats immunization anytime.
In fact, she muses, if you had a group of really attentive parents who were quick to spot the signs of the disease and get appropriate treatment, you could have “pertussis parties,” just as some parents today have “chicken-pox parties.”
That’s the kind of talk that makes Michelle Razore mad. Last October, Razore’s 2-week-old daughter, Natalie, turned listless, stopped eating, and started coughing so badly she turned blue. Razore, who saw a friend go through something similar with her child, suspected pertussis even earlier than Natalie’s doctor, who eventually directed the Clyde Hill mom to go immediately to Seattle Children’s Hospital.
Pertussis is most dangerous for infants, who are too young to receive the vaccine and whose immature immune systems are sent into overdrive by the disease. That may sound beneficial, except that the prodigious quantity of white blood cells so generated “blasts everything away,” not only the pertussis bacteria, says Tom Brogan, the intensive-care physician who handled Natalie’s care at Children’s.
Natalie’s white-blood-cell count was almost as high as that of leukemia patients. Doctors gave her two blood transfusions; “That wasn’t working,” Razore says. Her kidneys and lungs were failing, and Natalie started to retain water. “She was so puffy you wouldn’t even recognize her,” Razore says. “Our last effort was to put her on ECMO.”
Extracorporeal membrane oxygenation, as it is formally known, is a risky procedure that essentially allows a machine to take over for the lungs. Connected to a patient’s arteries and veins by bulging tubes, the machine oxygenates the blood outside the body, then directs the blood back inside.
The Razores had reason to despair. Doctors told them that no child with pertussis had ever survived the procedure at Children’s. By the time doctors resort to ECMO, it’s usually too late, Brogan explains.
But Natalie did survive, and is now a babbling, pink-cheeked 8-month-old. “Come here, sweetie,” Razore says, starting to feed her daughter while finishing the tale of her near-demise.
Razore’s experience has launched her on a new crusade. She’s been calling local hospitals to urge them to start a new policy of routinely immunizing new moms with the pertussis vaccine right after they give birth. The Razores don’t know who gave Natalie the disease, but doctors say mothers and other caregivers are generally the most likely to spread the disease to babies.
Razore knows her push for a new “mandate,” as she calls it, puts her in direct opposition to the anti-vaccine movement, and she seems to welcome the challenge. She has been in contact with the national Sounds of Pertussis Campaign, which tries to get people to vaccinate by talking about the dangers of the disease.
“They show a baby coughing in a mother’s arm,” Razore says, imagery she now considers way too soft. Compare that to pictures of Natalie on ECMO. Her tiny body looks otherworldly, with blood-filled tubes coming out of her every which way. Says Razore, “People need to know how bad it can be.”