Public health officials were not expecting the Haemophilus influenza type B outbreak in Minnesota last year that sickened five children, aged 5 months to 3 years, and killed a 7-month-old.

Out of those Hib cases (including the one who died), three were not immunized, one had not completed the primary series of shots, and the fifth was vaccinated, but had another health issue that was later detected.

Sara Lowther, an epidemiologist in the Minnesota Department of Health, found that not only weren’t children getting their booster shots due to a vaccine shortage, but they also weren’t getting their primary shots at all—in other words, their parents were not having them vaccinated, period.

“That was really alarming,” she says.

She coordinated a statewide survey of 1,600 children under the age of 5, having parents fill out quick surveys in pediatrician waiting rooms last February and March. (The initial goal was 2,000 children, as you can see at the health department’s summary of the survey). The goal? Figuring out what was going on. Were more children simply carriers of Hib? After all, that bacteria is still “pretty common,” she says. The answer, they learned, is no.

The data is still being analyzed and will eventually be published, “but in terms of preliminary evidence, we haven’t seen widespread Hib in these kids,” says Lowther. “We’re still trying to figure out why we saw the increase in cases. We’re still trying to figure out what this means.”

But one thing is abundantly clear.

“What we’re finding is there are more parents declining or postponing vaccinations,” she says, adding that it’s a concern they could become ill themselves.

Who are these non-vaccinators? Lowther says that the demographics are still being studied, but it’s a mixture of highly educated parents who are “reading up on everything they can,” and less-educated parents who have heard about concerns on vaccine safety.

“It’s a mixed bag, why people don’t vaccinate,” she says. “It’s complicated.”

What do non-vaccinating parents have to say? First, check out Babygooroo’s coverage of the flu vaccine), which includes viewpoints from those who do not vaccinate. And while we’re at it, let’s take a look at several recent research studies that address vaccine refusals, and the lack of trust that often accompanies them.

Vaccine refusal rates rising?
“There is evidence of an increase in vaccine refusal in the United States and of geographic clustering of refusals that results in outbreaks,” write the authors of the study “Vaccine Refusal, Mandatory Immunization, and the Risks of Vaccine-Preventable Diseases,” published recently in The New England Journal of Medicine.

Not only that, but “many parents follow novel vaccine schedules proposed by individual physicians,” says the study, referring to delayed vaccinations.

The study suggests that there’s a public perception that the severity of and susceptibility to diseases has decreased simply because there’s been a decrease of the actual illness. And public concern about vaccine side effects (“real or perceived,” the study cautions) are rising.

The study presents a cautionary tale: before the measles vaccination was implemented, around an average of 500,000 Americans got the disease each year. From 2000 to 2007, there was a mean of just 62 cases per year. But between January 1 and April 2, 2008, there were five measles outbreaks and 64 cases reported.

Another study, “Parental Refusal of Pertussis Vaccination is Associated with an increase of Pertussis Infection in Children,” published recently in Pediatrics, says that vaccine refusers have a “23-fold increased risk for pertussis when compared with vaccine acceptors, and 11 percent of pertussis cases in the entire study population were attributed to vaccine refusal.”

The study population was 156 lab-confirmed pertussis cases and 595 matched controls. The study’s authors admit to several limitations. The population was taken from a single health plan in Colorado. There was a “diagnostic bias”: researchers found that doctors were “more than three times likely to run pertussis lab tests on unvaccinated children”—but, the study adds, fully immunized children where twice as likely to visit the clinic in the first place. Those who don’t vaccinate, says the study, “use the medical system less frequently.”

The title says it all in yet another study, “A Broken Trust: Lessons from the Vaccine-Autism Wars,” published in Public Library of Science Biology. The study chronicles mounting public concerns, inspired by studies of mercury levels, lawsuits, and celebrity voices—like Robert F. Kennedy, Jr. and Jenny McCarthy—speaking out against vaccines.

“It does not mean you are not caring for your child”
When Madrona Wienges was pregnant with her first child, “I was just like every new mother with my first child when I was pregnant…trying to figure out what would be best for my baby,” says Wienges, a mother of three—aged 10, 6 and 20 months—in northeast Georgia. None of her children have received any vaccinations.

At the time, she lived in Canada, and one of her neighbors was Edda West, founder of the Vaccination Risk Awareness Network in British Columbia.

“She sat down with me, patiently answered my concerns and very confidently assured me that I could safely raise my child without vaccinating them,” says Wienges. “I read her articles and case studies and became an avid student of herbology, homeopathy and natural healthcare.”

Wienges’ children are home schooled and healthy; Wienges has only needed to use antibiotics twice among all three of them. Still, they have had colds, the flu, chicken pox and whooping cough. The latter was healed with herbal medicine and the help of a traditional Chinese doctor, she says.

“Parents are blessed to have a wealth of information on this sensitive issue,” she says, “In the end, it is a personal choice. If you choose not to vaccinate, it does not mean you are not caring for your child or others.”

Charging ahead now, fixing it later
Shannon Foley’s five children—ages 11, 8, 6, 4 and 2—have followed a slightly different vaccine schedule than the norm.

The eldest followed a routine schedule until his first measles, rumps and rubella shot, which resulted in a raised, discolored bump at the injection site for over two years (Foley says she was “blown off” and told she was imagining things from her doctor). The other children have only received the full diphtheria, tetanus and pertussis sequence—but started when they were a year old.

Her pediatrician wouldn’t discuss her son’s MMR reaction with her, and she wanted “some constructive dialogue, not to place blame or anything like that,” she says. “In the absence of that feedback I began a search on my own to gain more information about vaccinations, both here and around the world.”

She decided on the reduced vaccine schedule, and keeps an open mind to add more “as needed”—for community health, international travel or school situations, she says.

“I definitely think that used wisely, vaccines are a great gift,” says Foley, another mother in northeast Georgia. “However, as with all things in medicine and technology, using them requires a humility and an acceptance that we do not fully understand the depths of how vaccines work or effect us.”

She says she still has some reservations, inspired by a culture that readily accepts technology without asking questions.

“We have a history of using and promoting technology which in the end turns out to have very serious consequences,” she says, naming the long-term prescription of diethylstilbestrol (DES), thimerosal in vaccines (which is still in some flu vaccines), and even environmental problems like unchecked urban sprawl.

“We have a history of charging ahead and pushing ahead the latest and greatest technology, and then spending huge amounts of money and decades compensating and trying to fix and clean up the mistakes which we have made and left for our descendants,” she says.

What should pediatricians say?
Some pediatricians—such as, well-known, Dr. Robert Sears—are supportive of parents who choose delayed vaccination schedules.

But the opinion among many researchers is that it’s asking for trouble. “Vaccine delays may leave (children) with a high risk of contracting several vaccine-preventable diseases,” write the authors of the NEMJ study.

Pediatricians are “put in a potentially difficult place,” says Lowther, who says she understands why they might agree to delayed schedules to keep patients vaccinating at all.

“I don’t see patients, so I have a different point of view,” she says. “But I’ve worked on polio eradication in other countries, and I’ve seen parents bring in children with polio in their arms…I’ve seen polio cases. We’re very lucky in the U.S. to not see those cases.”

That sentiment might not convince non-vaccinators like Foley: “I don’t see it as a catastrophic event if my child gets childhood diseases,” she says.

“I am very thankful for the eradication of polio in this country, and understand that 50 years ago it was a very real threat to a child’s long-term well-being,” she adds. “However, that risk is no longer what it once was…Just as children are no longer vaccinated for small pox, it seems as though some consideration ought to be given for when a vaccine’s benefits no longer outweigh its risks or potential risks and its mandatory nature revoked.”