A Mother's Vaccine Crusade

"Devastated" By A Vaccine Injury To Her Son, Virginia Mom Builds 30,000-Member Network

"You don't have to be a rocket scientist to understand this stuff -- or to get the information you need to protect your child." -- Kathi Williams, co-founder of the National Vaccine Information Center.

It happened in April of 1982.

A Virginia hairdresser named Kathi Williams took her 18-month-old son, Nathan, to the pediatrician for a routine vaccination. Little Nathan was scheduled to receive his fourth "DPT" shot - a standard dose of three vaccines designed to guard against diphtheria, whooping cough (pertussis) and tetanus.

But something went terribly wrong.

"There was no problem at the doctor's office," said Williams in a recent interview. "But a few hours after we got home, my kid started this high-pitched, uncontrollable whooping. He screamed for about eight hours, and when he wasn't screaming, he would fall asleep.

"I didn't know any better; I just thought he'd cried himself to sleep. This was 1982, remember, and parents in those days were never given any information ahead of (vaccination) time.

"Later, after we got our organization going and I started looking at the medical literature, I realized that Nathan had experienced a classic neurologic reaction to a vaccine. His type of symptoms had been reported since the 1930s, and they can indicate that the brain is swelling.

"Nathan was left with brain damage. He wound up with learning disabilities, and attention-deficit problems. He definitely had a neurologic reaction that day. But I had no idea at that time that a child could get brain damage from a vaccination."

Williams said later medical studies showed that Nathan had suffered a genetically linked reaction triggered by an inherited vulnerability to brain seizures, something his mother occasionally suffers.

Soon after her son's learning and behavior problems began, Williams decided that something had to be done to protect other children from injury-by-vaccine.

As a hard-working hairdresser in the Washington suburb of Vienna, Va., she knew little about medical research. But she had a knack for communicating effectively with other people, and lots of determination. So it didn't take her long to hook up with two other Washington-area parents who had suffered devastating losses from immunization-linked catastrophes.

After forming a partnership with public relations specialist Barbara Loe Fisher (her son had been injured by a vaccine) and environmental lobbyist Jeff Schwartz (his daughter later died during a vaccine-related seizure), Williams helped to found the 30,000-member National Vaccine Information Center (NVIC). Launched in the early 1980s, NVIC became the nation's largest non-profit public interest group working in the field of vaccine injury prevention.

A Capitol Hill lobbyist, Schwartz was a key player in arranging for congressional testimony that led to the passage of the National Childhood Vaccine Injury Act in 1986. That legislation created a mechanism for compensating families whose children are injured by vaccines, while also mandating that information about possible adverse effects from vaccinations be made available to all patients before shots are given.

"Our goal is to prevent vaccine injuries and deaths through public education," says Williams. "You don't have to be a rocket scientist to understand how vaccines can on rare occasions seriously injure people.

"We're simply interested in disseminating information on this issue," said the activist, who has not sought federal compensation for her own son's documented injuries. "We've never taken a position against vaccinations, and we're certainly not anti-vaccine.

"At the same time, we believe strongly that people need to know about the risks involved, so they can make better-informed choices about particular vaccines."

Now 19 years old and in college, Nathan Williams survived his injury, although he struggled with learning disabilities and resulting "self-esteem issues" throughout childhood, according to his mother.

"My son's life was changed forever by that vaccine reaction," she says. "But I've always counted my blessings. I've always been grateful that his injuries weren't worse, because I've met a lot of parents whose kids were profoundly affected by these reactions."

Williams said the Vaccine Adverse Event Reporting System (VAERS) is a "terrific tool" for learning about potentially health-threatening reactions to vaccines. But she also contends that the current CDC-managed system for vaccinating children against infectious diseases is too large and too complicated for its own good.

"The system is unwieldy and unmanageable," she said. "These days, kids are getting 33 doses of ten different vaccines by the time they're two years old.

"In addition, the CDC is now looking at vaccines to prevent drug addiction, smoking and AIDS. Those vaccines are coming fast, and we're already hearing discussion at the CDC on where to put them in the schedule.

"Where is it all going to end? They're loading these kids up (with vaccines) by the time they're two years old, and it's vitally important that people educate themselves about possible risks before they start receiving all of these vaccinations."