FAQ about Anencephaly Investigation in Central Washington

May 28

This fact sheet is a re-write of a Washington State Department of Health fact sheet about Anencephaly. The goal was to increase accessibility and clarity.

The Washington State Department of Health is investigating a spike in the number of Central Washington infants born with a serious birth defect that affects the development of a baby’s brain and spine, a condition known as anencephaly. Anencephaly causes the brain, skull, and scalp of affected infants to be severely underdeveloped. It occurs early in pregnancy, often before a woman realizes she’s pregnant. Many infants with anencephaly are stillborn; the rest die within hours or days after delivery.

Recently, a health care provider in the Yakima-Franklin-Benton three-county area reported an unusual number of infants born with anencephaly, roughly five times the national average. We have joined local public health authorities and partnered with the Centers for Disease Control and Prevention (CDC) to conduct an investigation.

Here we have answered some common questions and concerns raised by community members regarding the investigation.

What did you look at during the investigation? What did you find?

We compared information from the medical records of women who had a pregnancy affected by anencephaly to that of women who had healthy pregnancies during the same time period. We looked at several potential risk factors for anencephaly including folic acid use, pre-pregnancy weight, family history, and health risk behaviors of the mother during pregnancy . We also evaluated the source of home drinking water.

We were unable to find any significant differences between women who had pregnancies affected by anencephaly and those with healthy pregnancies. However, we found that all the women investigated had low early pregnancy folic acid use. In the Yakima-Benton-Franklin area, in particular, folic acid use appears to be slightly lower than the statewide average: for 2009-2011, about 61% of people surveyed in the three-county area did not take a multivitamin, prenatal vitamin, or folic acid vitamin at all in the month before they got pregnant. This was true for only about 50% of people surveyed from the rest of Washington.

Should women who are pregnant or considering pregnancy in the three-county area be concerned?

While the rate of anencephaly in the region is higher than the national rate, the risk of having a baby with anencephaly is still quite low: about one in every 1,000 live births in the area is affected by anencephaly. From our preliminary investigation results, there is no reason to believe that women who live in the three-county area should take special precautions. However, all women who are pregnant or considering pregnancy should talk to their doctor and be aware of how they can best promote a healthy pregnancy.

What caused these cases of anencephaly?

We have explored several possible causes of anencephaly during our investigation.

Folic acid - The development of anencephaly is clearly linked to low levels of folic acid consumption in women in the month before becoming pregnant.
Radiation - Radiation from the Hanford Nuclear Facility has not been ruled out, but is unlikely to the be the cause. Radiation from the Fukushima disaster is highly unlikely to be the cause because these cases were diagnosed before the event and continued to occur after.
Pesticides - Pesticides are difficult to rule out as a cause because of the large number of pesticide products available and a variety possible routes for exposure. However, we found few cases with parents who worked in agriculture, no clear seasonal associations, and no clusters near farms, so pesticides are probably not the cause
Nitrates and bacteria in drinking water - The link between anencephaly and water contamination is unclear because not all affected cases used the same water supply: some households used private wells while the majority used public water systems. These public water systems were monitored and tested regularly and both nitrate and bacterial levels well within safe limits.

Is anencephaly preventable?

The most important way to prevent these birth defects is taking vitamins containing folic acid and eating foods high in folic acid. Some foods, like leafy greens and citrus fruits, are naturally high in folic acid. It is also added to many breakfast cereals and other grain products labeled “enriched,” such as bread, pasta, and rice. Most experts recommend all women of reproductive age take a daily supplement containing 400 micrograms of folic acid. Women who are pregnant or planning to become pregnant should follow their health care provider’s advice regarding diet, medications, and other health issues including taking vitamins containing folic acid.

What happens next?

The investigation is still ongoing. Although we were unable to find a definite cause, we are still concerned about the high rate of anencephaly in the area. Our study mainly used medical records which may not provide all of the information we need. We are continuing to track cases in the area looking for reasons for the higher rate. In addition, we held meetings with the affected communities to share our results and learn about community concerns. We also created an Anencephaly Advisory Committee to help identify ways to prevent or reduce cases of anencephaly in the area, to improve reporting, and to determine if additional investigation is necessary to identify possible causes.

Where can I learn more?

If you would like to know more about the investigation or need information in another language, please call our helpline at 1-800-555-1234.

For all other inquiries please visit: http://www.doh.wa.gov/AboutUs/ContactUs