Birth Defect Research for Children’s Executive Director was asked to review an article on “Environmental Factors in Birth Defects” that was published in the October edition of Environmental Health Perspectives, the journal of the National Institute of Environmental Health Sciences. Below is an excerpt from the article:
“Betty Mekdeci, executive director of the advocacy group Birth Defect Research for Children, says there are many problems with the basics of how birth defects are tracked and evaluated. Her experience of more than 30 years—prompted by her efforts, and those of her husband, to figure out why their son was born with multiple birth defects led her to conclude that some of the most important limitations include inadequate medical diagnostic codes for classifying many birth defects, inaccurate use of codes by health care practitioners to meet insurance billing requirements, and the inability of many health care practitioners to diagnose a birth defect at birth or in follow-up visits, and skepticism toward the input of parents, who usually know better than any one doctor about the full range of health problems their child is having.
To overcome some of these problems, Mekdeci and her colleagues have developed an alternative method of tracking birth defect incidence based on parent responses to a lengthy questionnaire. About 6,000 completed questionnaires have been collected since 1990. Mekdeci and her staff analyze the questionnaire responses for patterns, and she reports they have identified about half a dozen clusters so far. Although the group readily acknowledges these are self-reports from a self-selected population, some of the clusters have later been confirmed by various government agencies. For instance, in Dickson, Tennessee, they detected a cleft palate cluster that was confirmed by the CDC. The group sees its role as identifying birth defect cases and then encouraging health agencies to investigate.”
To view a copy of the full article: Environmental Factors in Birth Defects