One mother's testimony about her experience with vaccines

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Institute of Medicine Immunization Safety Committee

January 11, 2001

National Academy of Sciences, Washington, D.C.

Statement by Barbara Loe Fisher, President and Co-founder

Thank you for inviting me to share my thoughts about vaccine safety and communicate the concerns of thousands of mothers and fathers with vaccine injured children and those with well children, who contact the National Vaccine Information Center every year.  I think it is also important to acknowledge that a number of prominent scientists and physicians from leading universities and hospitals in the US, Canada and Europe spoke publicly about their vaccine safety concerns at the Second International Public Conference on Vaccination sponsored by our non-profit organization this past September.

I am the mother of a now-grown son, my first-born, who was left with minimal brain damage following a convulsion, collapse-shock and state of unconsciousness within four hours of his fourth DPT and OPV shots at age two and a half. The daughter of a nurse, the granddaughter of a doctor and a former writer at a teaching hospital before I became a mother 23 years ago, I thought I was an especially well educated woman when it came to science and medicine.

But, like most new mothers, I had no idea that vaccines carried any risk whatsoever. I’m not sure why I assumed vaccines were risk free, when I certainly knew that drugs and surgery entailed risks. Perhaps it had to do with the fact that vaccines are supposed to keep well people well. The concept of risk associated with a prevention is quite different from the concept of risk associated with a cure. At any rate, I believed vaccines were 100 percent safe and effective until my son, Chris, became a vaccine reaction statistic.

I am relating my experience because it is typical of the experiences you will hear from parents, who describe how their once healthy children became chronically ill following vaccination. Whether the vaccine reaction results in minimal brain damage, as was the case with my son, or more severe and profound brain damage, as is the case with those who have been awarded compensation under the National Childhood Vaccine Injury Act of 1986, there is a pattern and common experience that emerges. And that pattern and commonality of experience, reinforced over and over again with almost every vaccine reaction report, has contributed in no small way to why the vaccine safety issue will not go away, despite the concerted efforts by industry, government and medical organizations to convince the public that, when acute and chronic health problems follow vaccination, it is always just a coincidence.

Today’s college educated, well read, internet-savvy health care consumer, who becomes a parent and whose child experiences a vaccine adverse event, has the opportunity that I did not have as a young mother in the 1980’s to more quickly obtain information and then communicate with other parents who have shared the same experience. Like the biotechnology revolution, the mass communications revolution has created a national and international global network that shines a bright light on commonality of experience and gives immediacy and relevancy to it. That will continue to be true, even if government, industry and science continue to minimize the significance of that common experience.

In 1980, my son, Chris, was a healthy, cheerful, exceptionally bright two and a half year old child. A lively, contented baby who loved to be around people, he had begun saying words at seven months and speaking in full sentences at age two. At two and a half, he could identify the upper and lower case alphabet and numbers up to 20 and was beginning to identify words in the books we read together. He had memorized the deck of cards and created an interactive naming game he would play. One doctor told me he was cognitively gifted.

After his third DPT shot at seven months of age, there was a hard, red, hot lump that stayed at the site of the injection for several weeks. When I called my pediatrician’s office, the nurse told me it was “a bad lot of DPT vaccine” but not to worry. My response was to ask “Should I bring him down for another one?” because I thought she meant the shot might not have been strong enough and I wanted my baby protected.

The day of his fourth DPT and OPV shots, Chris was healthy except for slight diarrhea that was left over from a 48 hour bout with the stomach flu he had at the beach three weeks earlier.  The nurse giving him the shots said he didn’t have a fever and that a little diarrhea didn’t matter.

When we got home, Chris seemed quieter than usual. Several hours later I walked into his bedroom to find him sitting in a rocking chair staring straight ahead as if he couldn’t see me standing in the doorway. His face was white and his lips slightly blue, and when I called out his name, his eyes rolled back in his head, his head fell to his shoulder and it was like he had suddenly fallen asleep sitting up. I tried, but could not wake him. When I picked him up, he was like a dead weight and I carried him to his bed, where he stayed without moving for more than six hours, through dinnertime, until I called my Mom, who told me to immediately try to wake him, which I finally did with great difficulty. But he didn’t know where he was, could not speak coherently and couldn’t walk. I had to carry him to the bathroom and he fell asleep again in my arms and then slept for 12 more hours.

This was 1980. I had been given no information by my doctor about how to recognize a vaccine reaction.

In the following days and weeks, Chris deteriorated physically, mentally and emotionally. He no longer knew his alphabet or numbers and would not look at the books we had once read together every day. He had no interest in his beloved deck of cards and had lost the ability to concentrate for more than a few seconds at a time. My once happy-go-lucky little boy was now listless and emotionally fragile, crying at the slightest frustration as if his heart would break.

Physically, the deterioration was just as profound. He had constant diarrhea that looked like attic foam insulation, became emaciated, stopped growing and was plagued with respiratory and ear infections for the first time in his life. Sometimes I would catch him staring and drooling slightly from one corner of his mouth. My Mom used the term “spaced out” to describe him. The pediatrician told me it was just a stage he was going through and not to worry about it. But after eight months of deterioration, I decided to take Chris to another pediatrician, who took one look at him and told me he might have either cystic fibrosis or celiac disease. All diagnostic tests came back negative. None of the doctors knew what was wrong with my son, who had become an entirely different child physically, mentally and emotionally.

It would be another year before I saw the television documentary “DPT: Vaccine Roulette,” began research into the medical literature and found clinical descriptions of pertussis vaccine reactions in the pages of Pediatrics, the New England Journal of Medicine, The Lancet, and British Medical Journal which exactly matched the pertussis vaccine reaction symptoms I had seen my son suffer within four hours of his fourth DPT shot.

I learned that the British National Childhood Encephalopathy Study had found a statistically significant correlation between DPT vaccine and brain inflammation leading to chronic neurological damage and that the UCLA-FDA study had found that 1 in 875 DPT shots is followed within 48 hours by a convulsion or collapse/shock reaction just like my son had suffered.

I was stunned. I felt betrayed by a medical profession I had revered all my life.

The day my child reacted to the pertussis vaccine, he should have been in an emergency room, not unconscious in his bed.  As his mother, I should have had the information I needed to recognize a vaccine reaction and take steps to deal with it, including calling my doctor and later making sure the reaction was recorded in his medical record and reported to the vaccine manufacturer and health officials.

At age six, when Chris could not learn to read or write, he was given an extensive battery of tests that confirmed minimal brain damage which took the form of multiple learning disabilities, including fine motor and short term memory delays; visual and auditory processing deficits; attention deficit disorder and other developmental problems. He was removed from the Montessori school he attended and placed in a self contained classroom for the learning disabled in public school, where he stayed throughout elementary, junior and high school despite repeated efforts to mainstream him. Even with occupational therapy and counseling, he had a very negative educational experience, barely graduating from high school. As a young learning disabled adult, who blessedly survived the difficult teenage years without destroying himself like some of his learning disabled classmates, he is trying to find his place in the world, working in a mailroom and taking steps to better cope with the disabilities that made it difficult for him to learn in the classroom so he can get more formal education.

There is always the haunting vision of what would have been, intertwined with the certain knowledge that there is much to be thankful for. Both Chris and I know he was lucky compared to the children who have suffered vaccine reactions and been left quadriplegic, profoundly mentally retarded, epileptic or have died.

What I experienced as a young mother with my son is identical to the experiences of so many of the young mothers who today contact the National Vaccine Information Center. Mothers tell us how they took a happy, healthy, bright, normally developing child to the doctor to be vaccinated and then, within hours, days or weeks, their child regressed physically, mentally and emotionally and became a totally different child.

Many times, a mother will tell us that her baby exhibited acute symptoms within 72 hours of vaccination such as high pitched screaming or hours of constant crying sometimes alternating with extreme lethargy or long periods of unresponsiveness; head banging; twitching, jerking of the body or staring episodes; weakness or paralysis of one or more limbs; a dramatic change in eating and sleeping habits; loss of eye contact; restlessness; high fever; vomiting and diarrhea; body rash; or pronounced swelling, redness and heat at the site of the injection. 

These acute symptoms are often followed by a gradual deterioration in overall health, a picture that includes chronic ear and respiratory infections and onset of multiple allergies, including asthma; loss of appetite and persistent diarrhea; sleep disturbances that turn night into day and day into night; loss of developmental milestones like the ability to roll over or sit up; older children will complain of muscle weakness, joint pain and disabling fatigue and exhibit loss of memory and loss of previously demonstrated cognitive abilities, speech or physical skills; development of strange or violent behavior that includes hyperactivity, screaming, biting, hitting, social withdrawal, and obsessively repetitive movements such as flapping, rubbing, rocking and spinning. 

The once healthy, normally developing child becomes a totally different, sick child. And the mother, who carried that child inside her for nine months and nursed that baby after birth and whose every waking moment is connected to preserving the well-being of that child, knows her child in a way no one else does. The mother knows with all of her senses that her child changed and is different now, even if she doesn’t know why. It is a powerful experience, grounded in a primal love and instinct to nurture and protect her young.

Depending on the child and therapy interventions available, there is either gradual full recovery or the child is eventually diagnosed with varying degrees of permanent brain and immune system dysfunction ranging from severe and profound mental retardation and medication resistant seizure disorders, autistic behaviors, learning disabilities, attention deficit hyperactivity disorder or other chronic health problems.   

Upon questioning, many parents reveal that their child suffered previous vaccine reaction symptoms that were dismissed by their doctor as unrelated or unimportant. Others report their child was sick at the time of vaccination. Others report a strong family history of autoimmune disease. Still other babies, especially those whose vaccine reactions are followed by death, were born premature, were underweight or had a history of health problems prior to repeated vaccination.

In other words, these are children who have potentially identifiable genetic or other biological high risk factors which are not being factored into a one-size-fits-all national vaccine policy that today allows a baby to be injected with 9 or more vaccines on one day. The relatively small new vaccine pre-licensure studies do not include these categories of children routinely vaccinated in America, including premature, underweight and sick babies and those who have suffered previous vaccine reactions.

But how many children who react and become chronically ill are we talking about? Is it really only 1 in a 110,000 or 1 in a million who are left permanently disabled after vaccine reactions? Former FDA Commissioner David Kessler observed in 1993 that less than one percent of doctors report adverse events following prescription drug use. There have been estimates that perhaps less than 10 percent of doctors report hospitalizations, injuries, deaths or other serious health problems following vaccination.

There are about 12,000 reports made to the Vaccine Adverse Event Reporting System every year. If the number 12,000 only represents 10 percent of what is occurring, then the real number may be 120,000 vaccine adverse events.  If 12,000 reports represents only one percent of the actual total, then the real number may be 1.2 million vaccine adverse events annually. Yes, it is illogical to assume that all reported adverse events following vaccination are causally related. But is it not just as illogical to assume that most events are not?

If I had not walked into my child’s room when I did, I would not have witnessed the post-pertussis vaccine convulsion, collapse shock and six hour state of unconsciousness which, not counting the few minutes I was able to rouse my son to a state of semi-consciousness, was actually an 18 hour state of altered consciousness. If Chris had been a four month old baby and not a precocious two and a half year old, the regression he underwent following vaccination may not have been so immediately and dramatically apparent. How many mothers are not in a child’s presence to witness a serious vaccine reaction, which could easily occur in the middle of the night? And how many infants are regressing after vaccine reactions but are never diagnosed until long after the damage has occurred, thereby preventing even a temporal relationship between vaccination and neuro-immune dysfunction from being recognized?

Today, as vaccination rates with DTP, polio, MMR and Hib vaccines approach 98 percent for children entering kindergarten, those once common childhood infectious diseases have disappeared. My mother had whooping cough as a child and, as a nurse, took care of children on polio wards. I had rubella, measles and chicken pox and, in 1955, lined up in grade school to get my first dose of Salk polio vaccine. Mass vaccination with measles vaccine has driven the numbers of cases of measles down from more than 400,000 cases in 1965 to less than 100 in 1999. And the dreaded polio has been eradicated from our nation.

But individual and public health is not measured solely by an absence of infectious disease. Today, instead of epidemics of measles and polio, our children are experiencing epidemics of chronic disease and disability. In the past 20 years, rates of asthma and attention deficit disorder have more than doubled; diabetes and learning disabilities have tripled; and autism has increased by 300 percent or more in most states. Our public school systems are unable to build or staff special education classrooms fast enough to serve the millions of chronically disabled and ill children and the 425 billion dollar annual health care price tag to treat chronic disease continues to climb.

The larger unanswered question is: has the increased administration of multiple vaccines in the first three years of life, when the brain and immune systems develop most rapidly, been an unrecognized co-factor in the epidemics of chronic disease and disability plaguing so many children today?

Other potential co-factors are increased exposures to pesticides, chemicals and other environmental toxins; overuse of antibiotics and other pharmaceuticals; nutritionally compromised food sources and unhealthy lifestyles. But there is a compelling argument to be made that the dramatic increase in chronic brain and immune dysfunction in children, especially the rising number of reports of regression in previously healthy children, is due to an early exposure that is being experienced by all children but which is harming an expanding minority of them.

Genetic factors alone have been suggested as a cause for autism increases, for example. But if the presence of certain genes were the sole causal factor for autism, in order to explain the huge increase in autism in the past two decades, there would have had to be a significant genetic shift in the whole population.  A more likely explanation is that the presence of certain genes, together with one or more new environmental exposures which act as triggers, account for the increases in autism and other chronic diseases in childhood.

Many biological responses are at least partially under genetic control. If, for example, adverse responses to vaccination are tied to the genes responsible for predisposition to autoimmunity and immune-mediated neurological dysfunction, then it is possible that the addition of more doses of vaccines to the routine schedule in the past two decades has affected more and more children with that genetic predisposition. With each dose of vaccine or simultaneous injection of multiple vaccines, there may be a cumulative increased risk for vaccine-induced immune and brain dysfunction in genetically vulnerable children. So the pool of genetically susceptible children has not changed but the environmental triggers have increased. Therefore, when all children only were exposed to DPT and polio vaccine in the 1960’s, a tiny fraction of the genetically susceptibles responded adversely. But with the addition of measles, mumps, and rubella to the routine schedule in 1979, and then Hib, hepatitis B and chicken pox in the late 1980’s and 1990’s, far more of the genetically susceptibles have been brought into the vaccine adverse responder group.

My son, born in 1978, was part of the first bubble that turned into a tidal wave of learning disabled, hyperactive, autistic children that required the creation of special classrooms in the public school system to deal with this new phenomenon. Were he and his classmates the canaries in the coal mine, ignored because, as German immunologist Wolfgang Ehrengut once suggested “What must not be, cannot be?”

Certainly, the a priori assumption that increased use of multiple doses of vaccines over the past quarter century has played no role in the rise in chronic disease and disability in children is as unscientific and potentially dangerous as the assumption that an individual child’s regression following vaccination is only coincidentally and not causally related to vaccination, especially in the absence of basic science research into the biological mechanisms of vaccine-induced injury. Without pathological profiles to conclusively determine what is and is not a vaccine-induced event, the coincidence assumption will continue to be used to maintain the status quo, with all the inherent risks that assumption carries with it.

Epidemiological studies will be fatally flawed by the coincidence assumption in the absence of objective, science-based criteria for determining what is and is not vaccine-induced. This is especially true when, for the past 35 years, virtually all American children have been vaccinated with at least DPT and polio vaccines. Therefore, the true background rates in vaccinated children for mental retardation, medication resistant seizure disorders, learning disabilities, attention deficit hyperactivity disorder, asthma, diabetes and other chronic disease, is unknown. 

The two previous IOM committees charged by Congress with evaluating the medical literature for evidence that vaccines can cause injury and death pointed out “There are many gaps and limitations in knowledge bearing directly or indirectly on the safety of vaccines.” Little has changed in the landscape of vaccine reaction research since that assessment was made. And yet, the medical literature dating back to the turn of the last century is already rich with evidence documenting that the complications of vaccines containing lab altered viruses and bacteria are often identical to the complications of the infectious diseases caused by those same viruses and bacteria. From smallpox and polio to pertussis and rubella, the brain and immune system changes due to complications of disease is quite similar to that following complications of vaccination.

When you look at the possible biological mechanisms for vaccine-induced neuro-immune dysfunction, in addition to genetic factors, the picture is complicated by the presence of heavy metals in vaccines, such as the preservative mercury and the adjuvant aluminum. And there are other vaccine components, such as MSG and formalin that, together with residual DNA and possible adventitious agent contamination from animal human cell substrates, have unknown biological effects. In addition, atypical introduction of viruses and bacteria through vaccination has yet to be evaluated for the long term effect on chromosomal integrity and this is worth looking at as the past two generations of highly vaccinated children give birth to their children.

But what do we do if increased vaccination in childhood is contributing to increased chronic disease and disability in childhood? Some would view this as an unacceptable catastrophe for vaccination programs and public perception of them. This fear may be one reason why there hasn’t been a funding commitment to conduct basic science and applied vaccine adverse event research. If you don’t really look, you don’t have to deal with what you find.

But, in the long run, we have far less to fear by honestly searching for the truth and dealing with it now, than we do by failing to see the canaries dying in the mine before we take steps to modify vaccine policies to make them safer and more humane. It would be medically useful as well as more humane to find out why some children, like my son, respond adversely to vaccination. It would be useful to understand what common genetic and other host factors are shared by vaccine adverse responders, both those who fail to mount an antibody response and those who react, so that identification and screening techniques could be developed to spare their lives. With the human genome project yielding invaluable information, the more precise identification of individuals at increased genetic or other biological risk for responding adversely to vaccination would go a long way toward reassuring the individual mother that everything possible has been done to minimize the vaccine risk for her child.

The anecdotal evidence we have gathered for two decades suggests that a significant portion of vaccine injury and death may be prevented if children who exhibit acute severe reactions, especially those who suffer chronic health problems following vaccination, were not re-vaccinated; and if more caution were exercised when vaccinating premature and sick babies and children with personal or strong family histories of autoimmune or neurological disease, especially with regard to giving them multiple vaccines on one day.

This, of course, would require vaccine policies to abandon a one-size-fits-all approach, which has proven to be ill advised in many other areas of medicine. It would require re-thinking the mission of achieving a 100 percent vaccination rate with every vaccine and an institutional commitment to rejecting the idea that some children are expendable in order to achieve the mission.

The utilitarian pseudo-ethic, a politically motivated philosophical rationale used by the US Supreme Court to justify the state-ordered sterilization of a mentally retarded girl in 1927, but finally discredited as inherently immoral at Nuremberg in 1947, is being used today by public health officials to persuade states to force vaccination with informed consent. The argument is that all must take the risk for the greater good. However, the as yet unidentified genetic factors involved in vaccine injury and death means that vaccine risks are not being equally shared by all. Therefore, forced vaccination and the achievement of a 100 percent vaccination rate is a de facto selection and sacrifice of the genetically vulnerable in the name of the public good. And when it is your child and your family being dismissed as expendable, the full horror of why utilitarianism should never be used to justify public policy becomes very clear.

This brings me to the recent article published in the Journal of the American Medical Association, asserting that religious and philosophical exemptions to vaccination are endangering the public health and should be eliminated or severely restricted. Doctors, say CDC officials, should be given the power to sit in judgment on the depth and sincerity of a parent’s spiritual and conscientiously held beliefs. It is a chilling specter and one that is adding to distrust and fear of public health officials who have decided, with this arrogant stance, to further polarize an already polarized issue.

My second son, who is graduating with high honors from high school and heading for college next year, was vaccinated at age four with DT and polio vaccines and developed a pseudo tumor of the brain, from which he thankfully recovered with little residual damage. In my family, we do not have a history of neurological disease, convulsions or learning disabilities but we do have a history of serious autoimmune disorders, including rheumatoid arthritis, lupus, thyroid disease, diabetes and life threatening allergies to prescription drugs. There is no doubt in my mind that my children are genetically predisposed to adverse responses to vaccination but the CDC and AAP vaccine policies do not allow for medical exemptions for my children.

I am not alone. There are mothers, whose children have suffered vaccine reactions, who are being coerced by doctors to continue vaccinating with the threat that they will be reported to social services as child abusers and their children taken from them if they don’t comply. Children have been denied an education and denied health insurance by HMO’s and government entitlement benefits by agencies persuaded to employ a no vaccination, no health insurance and benefit policy. The mothers of these children know they have a sacred duty to protect their children’s lives and they live in fear of state officials and even their own pediatricians. The only legal protection they have is to exercise a religious or conscientious belief exemption to vaccination.

How can a humane and just society force a mother against her will to violate her spiritual and conscientiously held beliefs and risk her child’s life in the name of the public good? What state official or doctor can claim that moral imperative under any circumstance?

And if the informed consent ethic, which has been the gold standard in the ethical practice of medical care since World War II, is totally abandoned and replaced with state-forced risk taking that results in the sacrifice of the genetically vulnerable, what precedent does that set for all public policy which can be justified by government officials in the name of the greater good?

The more health officials and doctors force, rather than persuade, people to do what they want them to do, the more fearful and hostile the people will become. The more the reality of vaccine reactions, injuries and deaths is denied and minimized, the more distrustful the people will become. At a 1984 meeting of the Redbook Committee of the American Academy of Pediatrics, where we were discussing the framework for the table of compensable events that would become a centerpiece of the 1986 National Childhood Vaccine Injury Act, I said:  “A system that will not bend, will break.”

Seventeen years later, there is growing evidence that ideology not tempered with restraint and grounded in good science; inflexible administration of policy without compassion; refusal to allow informed, voluntary risk taking; dismissal of the suffering of individuals who are casualties of the program, all combine to destroy public confidence in and support of the mass vaccination system no matter how many advertising dollars are spent to promote the benefits and minimize the risks of vaccination.

You have a formidable task ahead of you and there are no easy answers. On your shoulders rests the hopes of mothers and fathers with children who have been hurt by vaccines and those who want their healthy children to stay healthy. What you choose to do, the guidance you choose to give at this crossroads, before scores of new vaccines are brought to market and mandated in the next decade, may well determine if the mass vaccination system in this country will bend or break.

My prayers and the prayers of every mother and father I know are with you.

National Vaccination Information Center