Washington State continues to see the rise of a rare disease.
The number of cases of a rare and tragic birth defect, anencephaly, have skyrocketed recently in Washington. This condition is generally fatal and causes babies to be born without parts of the skulls and/or brains.
Sara Barron, who has been a nurse for the last 30 years, worked in a small hospital in Washington State when she saw two cases of the birth defect in just two months. She was concerned by the unusually high number of cases in such as small hospital and reported the information to an obstetrician friend approximately 30 miles away. That physician had also just seen a case of anencephaly.
Barron notified the state Department of Health and made a health report, setting off an investigation.
Epidemiologists began to look over numerous hospital records within the three-county area. They found a total of 23 cases of anencephaly between January 2010 and January 2013. Officials estimate the incidence of affected babies to be around 8.4 cases for every 10,000 live births. This is much higher than the national average of 2.1 cases for every 10,000 live births.
Despite the sudden increase in interest among officials and researchers, it appears as though the investigation has begun to slow down, angering and frustrating healthcare workers and mothers who have given birth to children with birth defects.
One such case involved Andrea Jackman, who lived in an agricultural area of south-central Washington, Yakima Valley, when she was pregnant. Her daughter was born with a birth defect called spina bifida. Both anencephaly and spina bifida are neural tube birth defects that the state is currently tracking.
Jackman is dismayed that officials have not reached out to her to ask if she was exposed to anything while pregnant. She asked, “What are you researching if you haven’t physically called the families to find out?”
State epidemiologist, Mandy Stahre, explains that the state epidemiologists have chosen to look back at medical records, rather than interviewing mothers, a process that could make them relive the heartbreaking pregnancy. She notes, “(Medical records) give us a lot of information about all of the known risk factors.”