Hutch team helps raise awareness of mysterious cluster of babies born with anencephaly

Outreach workers from the Fred Hutchinson Cancer Research Center are drawing on years of community connections in south central Washington state to raise awareness about a devastating cluster of severe birth defects that no one can explain.

Staff members from the Sunnyside, Washington, office of the Center for Community Health Promotion began distributing fliers at health fairs this summer and informing local families about a recent spike in cases of anencephaly, in which babies are born without parts of the skull and brain.

“It’s not a topic that’s being talked about,” said Elizabeth Carosso, project manager with the Thompson Studies Group in the Fred Hutch Public Health Sciences division. Even when there is information, she adds, “it’s all in the English language.”

That means that many of the Hispanic families and others served by the center for 15 years haven’t heard that the incidence of anencephaly in the local region is about four times higher than the national average, according to government reports.

They don’t know that 32 babies since 2010 have been diagnosed with the rare defect in the three-county area that includes Sunnyside -- or that more than half of the mothers were Mexican-American.

And they’re not aware that as of June, there were five women in the region who reported they were pregnant with babies with anencephaly, all due later this year, according to Washington state health officials.

“There’s a lot that can be done,” said Carosso, noting that most of the staffers  were born and raised in the area and have deep ties to the community. They focus on health issues that affect minority groups.

“A lot of what we do is around cancer prevention, but when we hear of other things that also affect health disparities, we take it on.”

State and federal officials are urging groups like the Fred Hutch team to help as they begin to investigate the rise in anencephaly first noticed by a nurse at rural hospital in 2012.

A report last year by the Centers for Disease Control and Prevention and a later follow-up analysis revealed that the rate of anencephaly is about 8.7 cases per 10,000 births in the region, far higher than the national rate of 2.1 cases per 10,000.

The problem, first analyzed in an NBC News report, has stymied health officials, who say they can find no common link or common exposure to explain the rise in the birth defects. They say they’ve looked at everything from ground water contamination and pesticide use to nitrates in well water and the effects of the nearby Hanford Site, a nuclear landfill.

“We would love to find a smoking gun,” Dr. Juliet VanEenwyk, the former Washington state epidemiologist who led the early review, told reporters at a community meeting in May.

But health officials also cautioned that it’s not unusual to find no cause in a situation like this. Jim Kucik, a health scientist with the CDC’s Birth Defects Surveillance team, said it can take an analysis of a very large population to detect a definitive problem. Often, small clusters of birth defects turn out to be nothing more than coincidence.

For the first report, CDC and state health officials relied solely on medical records to detect the apparent cluster, said Dr. Mandy Stahre, a CDC’s Epidemic Intelligence Service Officer.

They didn’t interview the women behind the records because such an analysis can be time-consuming and expensive. Now, however, state health officials say they’re planning to interview mothers of babies with anencephaly in Benton, Franklin or Yakima counties who became pregnant and had an estimated delivery date after August 2012.

“This will help ensure that we have not overlooked any common exposures among case mothers in this area,” an Aug. 11 report from the Yakima Health District said. “We hope to have findings in July 2015.”

Dr. Cathy Wasserman, the new state epidemiologist for non-infectious conditions, declined to discuss the interview plans.

“We are still pulling together our protocol for the additional investigation of anencephaly in the three-county area and are in conversation with CDC about who we will interview and how we will contact the mothers,” she said in an email.

Wasserman also declined to provide details of the five anencephalic pregnancies reported this year, citing patient privacy protection laws. At least one young woman, Jocelyn Robles, 23, a farmworker from Sunnyside, told reporters this spring that she planned to continue her pregnancy. She said then that her due date is Oct. 31, Halloween.

In the meantime, state officials are stressing the need to raise awareness about the known causes of anencephaly and other neural tube defects, or NDTs. Those are problems that occur in the early weeks of pregnancy, usually before a woman knows she’s expecting. They’re caused when the tube that typically develops into the brain and spinal cord fails to close completely, according to the CDC.

A lack of folic acid is a chief cause of NDTs, which also include problems like spina bifida. Cases of NTDs dropped 36 percent in the U.S. after the Food and Drug Administration mandated in 1998 that grain products such as flour and rice be fortified with 140 micrograms of the B vitamin folic acid per 100 grams of flour.

But Hispanic women are about 20 percent more likely than other women to have babies with NDTs, according to the March of Dimes. In addition, corn masa, a population traditional food among Hispanic families, isn’t included in the grains required to be fortified.

In the lower Yakima Valley and other areas served by the Fred Hutch outreach program headed by Dr. Beti Thompson, less than 40 percent of women of childbearing age take folic acid, usually contained in prenatal vitamins. Only about 22 percent of mothers in the cluster took folic acid, analysis found.

Spreading the word that all women who could become pregnant need to take 400 micrograms a day of folic acid is crucial, state health officials say. Women who’ve had previous pregnancies with neural tube defects should take 4,000 micrograms of the vitamin a day, a dose usually obtained by prescription.

Users of small private water systems should also test their wells for presence of high levels of nitrates and bacteria, which have been linked to NDTs. The Fred Hutch team is particularly well-suited to offer that advice, Carosso noted.

They were recognized in 2011 by the U.S. Environmental Protection Agency for efforts to collect samples in the rural area to test for groundwater contamination, including pesticides and nitrates.

Health workers should also encourage women to receive medical care early in their pregnancies and to consider appropriate screening for birth defects and other problems, officials said.

Carosso said the team is considering plans to discuss the anencephaly cluster through connections with the local Spanish-language newspaper and a radio station, as well as through informal conversations with families.

“We would be happy to get this information into the community in the best way possible,” she said.