In her 30-year career as a nurse, Sara Barron had seen only two babies with anencephaly, a tragic birth defect in which infants are born missing parts of their brain and skull. But while working at a hospital in rural Washington state in 2012, she saw two cases in two months. To see that many in such a small hospital seemed bizarre to her.
Barron mentioned the unusual spike to an obstetrician friend working at another hospital 30 miles away. That doctor had just seen a case of anencephaly, too. Wasting now time, Barron called the state Department of Health and made a report.
Barron's phone call spurred epidemiologists into action. They went through hospital and doctors' records in a three-county area and found 23 cases of anencephaly from January 2010 to January 2013. Such a finding meant a rate of 8.4 cases per 10,000 live births -- four times higher than the national average of 2.1 cases per 10,000 live births.
Months later, Andrea Jackman, gave birth to a baby girl in Yakima Valley in south-central Washington. Her daughter, Olivia, was diagnose with spina bifida, which, like anencephaly, is a neural tube defect that Washington state is also tracking. Unlike anencephaly, however, spina bifida is usually not fatal.
Jackman says she's incredulous and outraged that state researchers haven't called to ask questions: What did she eat while she was pregnant? Did she spend time near farms that sprayed pesticides? Did she take any herbs or supplements? How about Olivia's father? Was he exposed to any toxic chemicals? But no one has called.
Mandy Stahre, the state epidemiologist who's investigating the cluster of birth defects, tries to deflect criticism, saying it might be upsetting for mothers to get a call with such questions.
Jackman says Stahre's attitude is paternalistic and condescending. She says she would do anything to help prevent another family from having a baby with a severe birth defect. State epidemiologists should have made those phone calls a long time ago, she says, since every day that passes, her memory, and those of other mothers, start to fade about what their habits were during pregnancy. "What are you researching if you haven't physically called the families to find out?" she asks.
Stahre has an answer to Jackman's question, claiming that the state examined the mothers' medical records. "(Medical records) give us a lot of information about all of the known risk factors," according to the epidemiologist.
But Dr. Beate Ritz, vice chair of the epidemiology department at the UCLA Fielding School of Public Health, says medical records are notoriously unreliable: One doctor, for example, might note whether a woman smokes, but another doctor might not. "From a research point of view, this is very bad research. The data quality on medical records is so low that it's not really research," says Ritz.
Stahr sticks to her guns, saying "We're still investigating this. This is nowhere near finished." In the meantime, she says pregnant women in the area should not be nervous.
But Sara Barron, the nurse who found the original cases of birth defects, isn't so sure. "I think it's very scary. I think there's absolutely something going on that needs to be investigated more thoroughly," she says. "I wish they would take it more seriously."