Birth Defects: Measures and Data
Why are birth defects a concern?While many birth defects can be surgically treated, a child affected by a birth defect may often need frequent and painful medical care and suffer serious health, emotional and social burdens. These burdens affect not only the child but also that child’s family and society as a whole.
Beyond the direct emotional and health impacts on affected children and their families, medical treatment and support services are a tremendous financial burden. For example, for children born in 1988, the lifetime expenses associated with 12 selected birth defects could amount to more than $8 billion in today’s dollars, or anywhere from $140,000 to $700,000 per child.
How are they tracked?Currently Washington State Birth Defects Surveillance System (BDSS) relies on hospitals to regularly report their data on children with the following conditions: neural tube defects, cleft lip/palate, hypospadias/epispadias, abdominal wall defects, limb reduction defects and Down Syndrome. When the report is received at the BDSS office, the data are processed and entered in an electronic database. This dataset is augmented with cases served by the Children with Special Health Care Needs (CSHCN) programs located throughout the state. The use of a passive surveillance system, the lack of data from the non-reporting facilities and the non-reporting of fetal deaths from most facilities may result in prevalence estimates which do not accurately reflect the magnitude of birth defects in Washington State.
Autism, Fetal Alcohol Syndrome (FAS), and cerebral palsy are included in the list of notifiable conditions; reporting these has been delayed as they are conditions not identified in the hospital setting. Plans are being developed to establish a case definition and reporting protocols.
Washington State does not currently contribute data to the National Birth Defects Prevention Network. At present, birth defects data are similarly not available for inclusion in the WTN query system due to BDSS concerns about data quality.
What is being done?State monitoring programs and registries provide researchers with basic information about rates of birth defects and can help identify trends. When combined with studies of genetics, molecular biology, etiologic investigations and environmental exposures, the information provided by birth defects registries has the potential to help uncover the causes of these conditions and prevent future cases.