The Save Babies Through Screening Foundation is the only national non-profit organization devoted exclusively to the advocacy of newborn screening.
The mission of the Save Babies Through Screening Foundation is to improve the lives of babies by working to prevent disabilities and death resulting from disorders detectable through newborn screening.
Save Babies Through Screening Foundation supports, assists and advocates for disorders that are detectable through filter paper newborn screening; are unlikely to be clinically diagnosed without screening; and cause mental retardation, physical disability and/or death in childhood when left untreated.
Although all babies get a routine newborn screening test, there are two major problems that Save Babies Through Screening Foundation addresses. One, according to Reuters Health, is that 1 in 3 positive test results is reported late, sometimes after the baby has already suffered brain damage or has died. Two, the number of disorders screened varies from location to location. In Mississippi* and Washington, D.C.,* and in fewer than 10% of various hospitals in the U.S., more than 50 disorders are screened with one specimen sample; yet most remaining hospitals are required to test for only 28 or fewer disorders. Some of the disorders are now linked with SIDS, per the Journal of Pediatrics and numerous other physicians’ publications.
Comprehensive newborn screening for most of the 50+ disorders and conditions advocated by the Save Babies Through Screening Foundation results in almost no false positives when performed by professionals who are well experienced in tandem mass spectrometry. Testing is inexpensive, and some insurance companies cover the cost. Unfortunately, there are only a handful of laboratories in the world that are experienced with comprehensive newborn screening, so many doctors simply do not know about recent comprehensive newborn screening advancements or its availability. Save Babies Through Screening Foundation educates parents and pediatric healthcare providers about available comprehensive newborn screening and the importance of reporting positive test results within 5 days** of birth.
* In Mississippi since July 1, 2003, and in D.C. since February 1, 2006
** National standards are 5 to 7 days, but studies have found that most test results are reported later than 10 days.