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“I’ve Heard Some Things That Scare Me”

Responding With Empathy to Parents’ Fears of Vaccinations 

By: Kenneth Haller, MD^a & Anthony Scalzo, MD^a

Published in Missouri Medicine, the journal of the Missouri State Medical Association, January/February 2012

Abstract

The Lancet’s 1998 publication of “Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children” by Andrew Wakefield, et. al., positing a causal relationship between MMR vaccine and autism in children, set off a media storm and galvanized the anti-vaccine movement. In this paper, centuries-old fears of vaccination and the history of autism as a medical diagnosis are considered, and an affective, family-centered approach to dealing with parental fears by physicians is proposed. 

Introduction

A three-month-old girl was admitted onto the pediatric clinic medicine service of a university-affiliated children’s hospital in the winter of 2008 with a three to four day history of worsening cough and fever leading to decreased oral intake. She had been brought to the emergency room by her parents and was observed to have paroxysms of cough and had a SpO2 on room air which would drop into the 70s during these episodes. Family history was significant for a teenage brother who had suffered a recent persistent cough for a few weeks but had experienced no fever. Despite her age, the baby had not received any immunizations on the advice of the family’s chiropractor. The family also said that they had “read some stuff on the Internet about shots and autism,” and they felt the baby would be better off not getting immunizations than “taking a chance” that vaccines might harm her. The baby’s nasopharyngeal swab was positive for pertussis, as was her follow-up culture. She required oxygen by nasal cannula for five days and was sent home after she was weaned to room air. The parents were counseled that the baby would likely still have a cough for many weeks to come.

This was one of three pertussis cases seen by the clinic medicine attending during one month on inpatient service, the first time in his career that he had seen more than one patient admitted for pertussis within a month.

On the Rise

He was not alone. In 2008, in the state of Missouri, there were 561 cases of pertussis reported to the Missouri Department of Health and Senior Services. Pertussis had been on the decline for the previous two years (308 cases in 2006, and 118 in 2007). The 561 Missouri pertussis cases represented an 82% increase over the five-year median of 308 cases. In addition, the number of reported pertussis outbreaks in Missouri also increased in 2008, from two reported in 2007 to 11 in 2008.¹

Elsewhere, things have been even worse. In 2010, 9,120 cases of pertussis were reported to the California Department of Public Health for a state rate of 23.3 cases/100,000. This is the most cases reported in California in 63 years, when 9,394 cases were reported in 1947, and the highest incidence in 52 years, when a rate of 26.0 cases/100,000 was reported in 1958. Of the 9,120 cases, 804 (9%) were hospitalized. 442 (55%) of hospitalized cases were infants <3 months of age, and 581 (72%) were infants <6 months of age. Ten deaths were reported. Nine fatalities were infants <2 months of age at the time of disease onset who had not received any doses of pertussis-containing vaccine. The tenth infant was an ex-28-week preemie who was two months of age and had received the first dose of DTaP only 15 days prior to disease onset. (California DOPH website)

Unfortunately, pertussis is not the only vaccine-preventable disease to be enjoying a resurgence. Nationally, the reported incidence of invasive Haemophilus influenzae disease has more than doubled from 0.48 cases/100,000 to 0.99/100,000 between 1999 and 2009, and the number of reported cases (all ages, serotypes) rose from 1,174 to 1,597 cases between 1994 and 2001.²

Furthermore, measles, which had been eliminated (defined by the Centers for Disease Control and Prevention as the absence of endemic transmission) in the United States in the late 1990s and likely in the rest of the Americas since the early 2000s, had 118 cases reported in the United States during the first 19 weeks of 2011, the highest number of reported measles cases for this period since 1996. (During 2001-2008, a median of 56 measles cases were reported to the CDC annually.) Of the 118 cases, 105 (89%) were associated with importation from other countries, and 105 (89%) patients were unvaccinated. Forty-seven (40%) patients were hospitalized, and nine had pneumonia. The largest outbreak occurred among 21 persons in a Minnesota population in which many children were unvaccinated because of parental concerns about the safety of the measles, mumps, and rubella (MMR) vaccine. That outbreak resulted in exposure to many persons and infection of at least seven infants too young to receive MMR vaccine.³ (See Figures 1 and 2.)

Figure 1: Distribution and origin of reported measles cases (N = 118) --- United States, January 1--May 20, 2011, The figure above shows the distribution and origin of reported measles cases (N = 118) in the United States during January 1-May 20, 2011. Source: http://www.cdc.gov/vaccines

Figure 2: Cumulative number of measles cases reported, by month of rash onset --- United States, 2001--2011, The figure above shows the cumulative number of measles cases reported, by month of rash onset, in the United States during 2001-2011. During January 1-May 20, 2011, a total of 118 cases were reported, the highest number reported for the same period since 1996. Source: http://www.cdc.gov/vaccines

In August 2005, a five-year-old boy with autism died in a physician’s office while receiving IV chelation therapy with Na2EDTA instead of CaNa2EDTA. The medical examiner report listed the cause of death as “diffuse, acute cerebral hypoxic-ischemic injury, secondary to diffuse subendocardial necrosis” likely due to the severe hypocalcemia. The case was investigated by the Pennsylvania State Board of Medicine (MMWR March 3, 2006), and it was clear that the hypocalcemia resulted from the inappropriate use of Na2EDTA.⁴

So what is going on? Why is childhood vaccination, which has reduced morbidity and mortality by margins unimaginable a century ago, being rejected by so many parents, and how have physicians and public health professionals failed to make the case for immunization? The purpose of this paper is to examine some of these issues around vaccination and how we, as medical and public health professionals, can more effectively and compassionately respond to parental concerns, both in the public sphere and in our one-to-one office encounters.

The Unnatural Act of Vaccination

While it is easy to view Andrew Wakefield’s 1998 paper, “Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children,” in The Lancet⁵ as the cause of the modern anti-vaccine movement, it may more accurately be viewed as giving already skeptical parents a “scientific” excuse to indulge in popular and centuries-old misgivings about the very idea of vaccination in the public mind. 

In his essential 2011 book, The Panic Virus, journalist Seth Mnookin, writes, “it’s remarkable how static the makeup, rhetoric, and tactics of vaccine opponents have remained over the past 150 years. Then, as now, anti-vaccination forces fed on anxiety about the individual’s fate in industrialized societies; then, as now, they appealed to knee-jerk populism by conjuring up an imaginary elite with an insatiable hunger for control; then, as now, they preached the superiority of subjective beliefs over objective proofs, of knowledge acquired by personal experience rather than through scientific rigor.”⁶

Happily, the fact that vaccines have been spectacularly successful at drastically reducing the incidence of diseases like measles, polio, and pertussis, has meant that generations of parents have grown up without the specter of childhood death due to infectious disease. In the eighteenth century, before Jenner developed the cowpox-based vaccine for smallpox, the deadliest and most feared disease of the time, smallpox inoculation was introduced to Europe, probably from China, and involved lancing open a wound in the skin of an uninfected person and implanting scabs or fresh pus from a smallpox sufferer into these wounds. The inoculated person would usually develop a milder form of the disease and develop lifelong immunity, but death after inoculation was not uncommon. In March 1730, Benjamin Franklin reported in his newspaper, The Pennsylvania Gazette, that, of 72 Bostonians recently inoculated with smallpox, only two died while “the rest have recovered perfect health… Of those who had [smallpox] in the common way, ’tis computed that one in four died.” These inoculation-associated deaths would be acceptable to a populace sadly and intimately familiar with a deadly disease, but in a society where these diseases have become relatively uncommon – and where, in fact, a large percentage of doctors have not even seen actual cases of many vaccine-preventable infectious diseases – parents may reasonably feel that delaying or even refusing vaccination for their children makes sense. Vaccines may very well be victims of their own success.

Yet even when the public does know the ravages of disease, unease about inoculation and vaccination is not uncommon. Because inoculation with smallpox did sometimes lead to death, it was railed against as an affront to the Sixth Commandment, “Thou shalt not kill.” And in 1802, a political cartoon was published showing people developing horns and hooves as a result of receiving Edward Jenner’s cowpox-derived vaccine. 

Unfortunately, in the history of immunization – and of medicine in general – there are myriad examples of morbidity and mortality resulting from vaccination and scientific experimentation that have been passed down to parents already uneasy about the idea of subjecting their children to multiple painful injections.

In the fall of 1901, for example, 13 schoolchildren in St. Louis, Missouri, died of tetanus after they were treated with the diphtheria antitoxin. This occurred almost simultaneously with the deaths of nine schoolchildren in Camden, New Jersey, which were associated with a commercial vaccine allegedly tainted with tetanus. These deaths led Congress to enact the Biologics Control Act of 1902, establishing the first federal regulation of the vaccine industry, but the damage had already been done in the public mind.⁷

In early 1976 the Ford administration spearheaded a crash vaccine program when it was feared that a strain of flu similar to the 1918 pandemic strain would be appearing the following flu season. This became known in the press as Swine Flu, and the government rolled out its vaccine on October 1. While no one became sick with the feared strain of flu, by the end of November over 500 of 40,000,000 vaccine recipients had developed Guillain-Barré Syndrome, a rate seven times greater than expected for the population. Though alarming, these numbers did not reach a level of statistical significance and causality was never established. Nevertheless, in a hail of negative press, the program was halted on December 16, 1976.⁶

Meanwhile, in the mid- to late-1970s concerns were being raised about pertussis vaccine, particularly about purported neurological problems suffered by children after receiving the vaccine. While doctors were aware that children frequently had high fevers, febrile seizures, and extreme irritability after receiving the diphtheria-pertussis-tetanus (DPT) vaccine, there had never been any evidence that the vaccine caused any long-term sequelae. Nevertheless, the press began to pick up on this fear, and a turning point came with the airing of a television special called, “DPT: Vaccine Roulette,” in 1982. The program, originally shown locally in Washington, DC, but picked up by stations throughout the US, became a rallying cry for burgeoning anti-vaccine forces with its heart-wrenching depictions of children suffering from brain damage, seizures, and mental retardation, purportedly as a result of receiving DPT vaccine. 

In late 1998 and into 1999, a provision of the Food and Drug Administration (FDA) Modernization Act of 1997 which required a federal report on levels of mercury in drugs and food was approaching the end of its two-year reporting timeframe. Thiomerosal, an ethylmercury compound that had been approved for use as an anticontaminant in vaccines in the 1940s, came under scrutiny. From a toxicology perspective mercury has long held a position of prominence as a heavy metal toxicant. The environmental disaster of Minamata Bay, Japan, in the 1950s, resulted from the release of highly toxic methyl mercury into Minamata Bay in Kumamato Prefecture, and images of neurodevastated children in Life magazine loomed large in the public imagination for decades. (See Sidebar, page 44).

Beyond general misgivings about vaccination, specific populations also feel they have reason to mistrust the medical profession. In particular, the notorious Tuskegee syphilis experiments stand out in the consciousness of the African-American community as only the most famous example of centuries of mistreatment by physicians.8 With regard to immunization, the fear of being experimented on by the government contributed to some mothers’ worries about vaccine safety. According to one mother: “[Tuskegee] always sticks in my mind. That you really don’t know what’s happening and here these people were guinea pigs and just don’t want my children to be part of that.” ⁹

Autism, Parents, the DSM, and Doctors

Though child psychiatrist Leo Kanner first coined the term “autism” in his 1943 paper “Autistic disturbances of affective conduct,” in which he described children with an inability to form normal human attachments, an extreme lack of empathy, and a tendency to get unnaturally absorbed in routine tasks, it wasn’t until his 1949 paper, “Problems of nosology and psychodynamics in early childhood autism,” that he discussed his observations of the parents of autistic children. He observed that “aside from the indisputably high level of intelligence, the vast majority of the parents of the autistic children have features in common which it would be impossible to disregard… Most of the parents declare outright that they are not comfortable in the company of people...” Furthermore, “The parents’ behaviour toward the children must be seen to be believed. Maternal lack of genuine warmth is often conspicuous in the first visit to the clinic.” Kanner concludes that the parents “themselves had been reared sternly in emotional refrigerators.”⁹

In the 1950s Bruno Bettelhiem, whose “status as a pioneering medical doctor, his academic bona fides, and his media savvy gave his opinions more weight than those of Kanner,”⁶ took this observation a step further, from Kanner’s non-judgmental descriptions which did not imply an etiology for autism, to the dreaded “refrigerator mothers,” harridans who emotionally isolated their children and cut them off from nurturing human contact.¹¹ According to his biographer, Richard Pollak, “No prominent psychotherapist of this time was more antagonistic to mothers—in private and in public—as [Bettelheim] was, insisting that they caused autism by rejecting their infants and comparing them to devouring witches and the SS guards in the concentration camps.”¹² As ludicrous as this seems from today’s perspective, “[t]he readiness with which Bettleheim’s theories were embraced illustrates how what are thought of as indisputable, evidence-based conclusions are influenced by prevailing social and cultural norms.”⁶

For decades then, parents, devastated by their child’s descent into a non-verbal state of repetitive self-stimulatory activity, desperately seeking answers, causes, and hope would be met by physicians who, with the best of intentions, would tell them, “Well, we don’t know what causes autism, but we think it was something you did.”

In 1952 the American Psychiatric Association published the Diagnostic and Statistical Manual of Mental Disorders (DSM), a compendium of standard criteria for the classification of mental disorders. In this first iteration, autism is not mentioned as a separate diagnosis or syndrome but as a descriptor under “schizophrenic reaction, childhood type,” which included “psychotic reactions in children, manifesting primarily as autism” as one of its symptoms. The DSM-II, published in 1968, still included autism only as a symptom under childhood schizophrenia. “Infantile autism” did not become a free-standing diagnosis until the publication of the DSM-III in 1980. The definition was expanded in the 1987 DSM-IV, which changed the diagnosis to “autistic disorder.” In 1994 the larger class of “pervasive developmental disorders” was introduced to include autistic disorder, along with Rett’s disorder, Asperger’s disorder, childhood developmental disorder, and pervasive developmental disorder, not otherwise specified, (PDD-NOS), and all of which are considered autism spectrum disorders (ASD).

Over the years, as diagnostic criteria for ASDs have been both broadened and refined, physicians and parents have each become more aware of the signs and symptoms of autistic disorder and related disorders which have steadily encompassed greater numbers of children. In 2007 the American Academy of Pediatrics recommended that pediatricians observe for signs of autism at every well child visit and that they perform screening with the Modified Checklist for Autism in Toddlers (M-CHAT) at the 18 month and 24 month well child visits.¹³

So in the nearly seven decades since Kanner first described autism, doctors are increasingly able to screen for ASDs earlier and begin to offer parents at least a glimmer of hope with early intervention programs. Still, many parents continued to live with blame, guilt, and isolation, all the while caring for difficult, frustrating children. These parents needed someone to give them hope, both that there might be a way to at least partially restore their children to health and to give them answers for what went wrong in the first place. In 1998, they finally found their savior, and his message was all the more satisfying for taking the burden of guilt for their child’s autism off of their shoulders and placing it on those who had blamed and shamed them for their child’s illness for so long – their doctors. 

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