Monday, March 3rd, 2014
Doctors and public health officials are puzzled by why a cluster of diagnoses of anencephaly, a fatal birth defect in which infants are born missing parts of their brain and skull, has emerged in Washington state. The spate of diagnoses is leading parents and doctors to question how rigorous epidemiologists are being in determining the causes of the defect. CNN has more:
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For months, Andrea Jackman has been expecting a call from the Department of Health.
While pregnant, Jackman lived in the Yakima Valley, an agricultural area in south-central Washington. Her daughter, Olivia, was born in September with spina bifida, which, like anencephaly, is a neural tube defect the state is also tracking. Unlike anencephaly, however, spina bifida is usually not fatal.
She 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, says it might be upsetting for mothers to get a call with such questions. Most of the women were pregnant with babies who had anencephaly, and the outcome is always horrible. If a woman didn’t miscarry, she had to make a decision whether to terminate her pregnancy or go ahead and have a baby sure to die soon after birth.
Stahre and her colleagues asked themselves: Would a phone call traumatize these women?
“We have to weigh that heavily. This is a devastating diagnosis, and we know that for a lot of these women they had to make some hard choices,” Stahre says. “We have to weigh how invasive we want to be with these types of interviews.”
Jackman says that 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.
‘Very bad research‘
Stahre has an answer to Jackman’s question: The state examined the mothers’ medical records, which revealed, among other things, the women’s home addresses.
By the address, epidemiologists can learn a mother’s water source, whether she lives near an agricultural area and whether she took folic acid early in pregnancy, which helps prevent neural tube defects.
“(Medical records) give us a lot of information about all of the known risk factors,” the epidemiologist says.
The state’s rigorous search of the women’s medical records, along with birth and death certificates, found nothing linking the families who had babies with birth defects.
That finding doesn’t surprise Dr. Beate Ritz, who’s done several studies on birth defects.
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,” she says.
She says medical records reveal whether a woman has been prescribed any drugs, or diagnosed with a certain condition, but they don’t contain detailed information about a mother’s diet or possible toxins she might have been exposed to in the environment.
“The data quality on medical records is so low that it’s not really research,” she says.