During my pediatric residency, I took care of a three-week-old girl who went deaf from bacterial meningitis due to Haemophilus influenzae type b, an outcome against which pediatricians and other physicians have had a preventative since 1984. This little girl’s mother had never vaccinated her daughter or any of her children against anything; until that moment, they had been lucky.

Shortly before she fell ill, the girl’s older brother came down with an upper respiratory infection from this bacteria. He ended up being fine — it usually causes no more than a bad cold in older children — but before he cleared the infection he passed it to his baby sister.

I imagine the sounds in this baby girl’s first days of life: Her mother’s voice cooing to her. A silver Tiffany rattle jangling. The bubble and hiss of water on the stove boiling over as her bottle warms. Those sounds, uninterpretable to her at three weeks in the inchoate structure of a still-developing brain, are all she will ever hear. On her 22nd day of life, she became deaf and the world went permanently silent.

This was preventable. A simple decision made with the older child could have saved the little girl’s hearing. Most of us, if offered the knowledge of the consequences of that choice, would take the other path and vaccinate. It’s a “gimme,” isn’t it?

Which is why I was surprised years ago at the mother’s response when I asked if she would now give her children the benefit of modern medicine’s vaccinations.

She said no.

Why was it so easy for her, even when confronted with such an outcome, to cast aside nine decades of vaccine success stories?

Milk made

From the Latin for “cow,” vaccination owes its name to the first virus used in a vaccine: cowpox, or Vaccinia virus. In 1796, Edward Jenner acted on the long-known phenomenon that milkmaids who had contracted cowpox did not later come down with smallpox. Cowpox turns out to be similar enough to smallpox, with less deadly consequences, to provoke the immune system to create antibodies that later fight off the more virulent disease. Jenner developed the smallpox vaccine we still use today.

The term was later applied more broadly to the concept of inoculation with any infectious organism in order to induce immunity. And with the invention of tetanus and diphtheria vaccine in the 1920s, polio vaccine in 1952, and others later on, the application for immunization was broad indeed. The widespread use of vaccination has transformed our world:

Infant mortality due to infectious causes has greatly decreased, despite claims to the contrary.

Previously widespread childhood disease and death from infections like meningitis and pneumonia is decreasing.

Certain previously widespread cancers, like liver cancer caused by hepatitis B, can now be prevented by vaccination against the causative agent.

Vaccines have been wildly, demonstrably successful. In the face of all the evidence, why did the mother of this little girl choose not to vaccinate? Like any parent making a decision, those who do not vaccinate choose based on their perceptions of the risks and benefits to their child — risks that have lately been perceived as too high.

Mercury rising

People have questioned the need for vaccination back to Jenner’s invention of it. Criticisms have come and gone like fads, but the latest has been as hard to eradicate as some of the diseases that vaccines prevent. The current wave of anti-vaccine fervor dates to a single study published in 1998 by Andrew Wakefield.

The study claimed to show a link between measles-mumps-rubella (MMR) vaccination and the later development of autism. It was all over the news; understandably, parents were nervous. And then some stopped vaccinating their children. That shift was enough to overcome “herd immunity,” a statistical point at which sufficient immunity levels in a community will abort transmission and protect even unimmunized individuals. Breaking herd immunity leads to outbreaks.

The study didn’t posit what biological cause connected MMR and autism. That left room for speculation, initially pointing to an organic compound that contains mercury (thimerosal) and has been used as a preservative in MMR and other vaccines since the 1930s. Then it was other toxins. Then concerns turned to the number of proteins in the vaccines — we were giving our children too many antigens for their immature immune systems. As with most arguments and concerns arising from fear, the anti-vaccine community became a hydra: as every concern was addressed, two, three, four new ones appeared to take its place. Something in the vaccines was causing autism.

Fifteen years later, nearly all concerns have been addressed in spades. To begin with, we now know that Andrew Wakefield committed fraud and misconduct in his initial study, motivated by the promise of money generated from increased medical testing and from lawsuits against vaccine manufacturers. The Lancet, which published the study, shamefully took until 2010 to retract it fully. (Wakefield had his medical license revoked in Britain, but continues to speak to anti-vaccination groups promoting his discredited research.)

We know that MMR has been shown over and over and over again to have no link with autism. Thimerosal was removed from vaccines in the United States in the years following the Wakefield study, but this hasn’t affected the rate of autism among vaccinated kids, nor did it in countries that had earlier removed it. We know that the number of antigens a child is exposed to with even a single bacterial ear infection far outnumbers the antigens in all the vaccines put together, and moreover has no bearing on autism rates. (The Autism Science Foundation has additional links to studies for further reading.)

With all this to help assuage their fears, why do parents still choose not to vaccinate? It’s about the narrative created by anti-vaccine advocates who shape misinformation, outdated or discredited studies, and anecdote into a compelling story that provides a putative cause for a condition that appears to be growing in incidence.

“That’s My Science”

Jenny McCarthy. While the anti-vaccine movement did not start with her, a centerfold model and cable-television star, she has become the public face of many aspects of it thanks to media interviews and rallies. She has been a vocal proponent of reducing the number of vaccines, eliminating additives to vaccines, and altering the vaccine delivery schedule.

One of her notable interviews was on Larry King Live on CNN. It was typical of her media appearances: over the course of the interview, Jenny McCarthy and other anti-vaccine advocates are allowed to present their viewpoint with no opposition from the mainstream medical community or the pro-vaccine advocacy community.

Even when opposition is allowed to be presented, it isn’t on the same basis as McCarthy. In a now-famous interview on the Oprah Winfrey Show, Oprah reads a statement from the Centers for Disease Control (CDC) which states, among other points, that science has shown from multiple studies that there is no evidence that vaccines cause autism.

To which Jenny replies, “My science is Evan, and he’s at home. That’s my science,” and the audience tearfully claps, nodding in agreement. To paraphrase George Lucas: So this is how science dies — to thunderous applause? In the court of public opinion, data, and statements, and science are no match for an emotional parent and her child.

So how can we, the medical community — how can I, as a pediatrician — win an argument like this? To us, in the world of science and medicine, data trumps anecdote. Is there a way to make data a narrative? Is there a way to make the right kind of data heard? Because the data is there. Cases like the one I began with are becoming all too common…again:

Measles, once eliminated from the United States, is now on the rise. In 2011 there were 222 cases, many of which were in undervaccinated children. One outbreak in Minnesota affected six children whose parents had willfully withheld the MMR vaccine due to concerns over autism.

Whooping cough (pertussis) cases have been rising overall for the past two decades, and outbreaks are becoming more frequent, with 27,000 cases in 2010, and preliminary data from 2012 suggesting even more. Much of 2010’s outbreak was due to parents’ intentional undervaccination. In 2012 there were at least six deaths in children due to pertussis — a disease we can entirely prevent.

Each of these data points is, of course, a story.

Empirically human

We, as people, as parents, need to see the evidence in front of our faces. Rational as we apes are, our emotional mammalian brains still respond to a good scare or gross-out far better than to a research paper. In fact, our rationality as a species demands this: our curiosity and intellect, while enabling us to abstract, also compel us to disbelieve what we cannot see and understand. Damage, morbidity, and disease of a personal nature all trump data. At least they do for my patients’ parents, and so perhaps for everyone.

Recently, I had to counsel a family on giving the tetanus/pertussis vaccine (Tdap) to their pre-teen son. He had a neurologic diagnosis, and the father was convinced that his previous pertussis shot at age four had caused it. I failed to disprove the connection between the vaccine and the disorder to the father’s satisfaction, and he nearly took a swing at me. I managed to calm him down.

The father then said, “Well, I’m not sure which of these vaccines he really needs, is all.” So I told him the other data: that pertussis is rising, that Long Island is in the middle of an outbreak right now, that not vaccinating is known to put you at risk. And I told him a story: that I had just cared for a baby in the ICU who was hospitalized for pertussis for three weeks, on a ventilator, and nearly died because the parents hadn’t vaccinated her yet. “Okay,” he said. “I guess this is one he really needs.” And that was that.

I was taught to use data to prove my point of view and to refute others. By knowing the history of vaccines, their historical benefit, and why the anti-vaccine groups are wrong — surely this alone will allow me to convince parents to vaccinate. But I can see it’s not always enough. As a doctor, I don’t have to convince someone that vaccines don’t cause harm; I just have to convince them that not vaccinating does.

So: let me tell you a story about a little girl who went deaf.

Biographical details of patients and families were changed to protect their privacy.

Saul Hymes is an Assistant Professor of Pediatric Infectious Disease at Stony Brook Long Island Children's Hospital, not far outside New York City. When he is not caring for children with infections, doing clinical research on antibiotics, or teaching the next generation of doctors, he greatly enjoys writing, and would have been a journalist or computer programmer in another life. He posts infrequent medical musings.