About 25 community members turned out Tuesday night for a question-and-answer forum about anencephaly, a fatal birth defect that has been occurring in high numbers in a three-county region, including Yakima.
State health officials had few answers but offered a comprehensive explanation of their investigation thus far.
The listening session was held as the state Department of Health prepares for its first meeting of an advisory committee tasked with figuring out where the investigation should go next, and how public health officials can best prevent high numbers of the neural tube birth defect.
Those in attendance quizzed officials on nitrates in the water, pesticide exposure, diet, location of the cases, proximity to Hanford, folic acid, early detection, tracking, history, prevalence among Hispanic women, prenatal education — just about every risk factor the state has investigated and will keep investigating as it looks into the cluster of cases.
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Unfortunately, many of the questions were met by the same answer: We don’t know yet.
“We would love to find a smoking gun, and have things align; if you find a cause, you can prevent. If you can’t find a cause, you can’t prevent,” said state epidemiologist Dr. Juliet VanEenwyk, who moderated the meeting and addressed most of the questions.
The area of Yakima, Benton and Franklin counties has for the past four years seen an abnormally high rate of anencephaly, a rare and fatal birth defect that occurs when the protective neural tube fails to close at the base of the skull. Most babies are stillborn; about 25 percent live for a few hours or days after birth.
State health officials started investigating in the latter half of 2012 after first being alerted to the unusual number of cases. Since then, they say they have scoured local hospital and clinic records to identify all possible cases, and studied the medical records of affected women to determine where they lived, whether they were taking their prenatal vitamins, if they were on private wells for water, and several other risk factors. So far, no common cause has stood out.
The conversation Tuesday night at the Sunnyside Community Center was highly interactive, with several community members asking probing questions about the science of neural tube defects and how thoroughly the Health Department has consulted existing research on the topic. There will be another session at the Benton-Franklin Health District office in Kennewick tonight.
Several nurses and doctors from various health care organizations in the Valley attended.
“It absolutely is a worthwhile exercise; I only wish there were more people here” to hear the message, said Dr. Dean Effler, a retired physician who lives in Yakima.
In addition to relaying valuable information, he said, the state is wise to prepare the public for what may be a disappointing outcome to the investigation.
“It’s helpful that people know ahead of time that even if they do a large study, they may not come out with an answer,” Effler said.
A few families who have been personally affected by anencephaly were in the audience.
Don and Shirley Dufault lost a baby to anencephaly in 1977 and have been looking for answers for a long time. They’re glad to know that the Health Department is actively investigating and involving the public in a discussion, but they’re hoping for something more concrete.
“They don’t have answers,” Shirley Dufault said after the two-hour meeting. “I don’t know what to say. I’m sure they’re trying. They just have to keep trying.”