Save Babies Through Screening Foundation is a non-profit volunteer organization whose mission is to improve the lives of babies by preventing mental retardation 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.
Currently, 4 million babies are born each year in the United States. Only 400,000 of those babies, a mere 10%, receive adequate comprehensive newborn screening. The rest are left to chance, possibly facing mental retardation, physical disability, or even death. Many of these inadequately screened chldren will die suddenly as infants and be declared victims of sudden infant death syndrome, which they are not. Early detection and treatment can provide maximum benefit to affected children.
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 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 sample; yet most remaining hospitals are required to test for 28 or fewer disorders. Some of the extra disorders are now linked with SIDS, per the Journal of Pediatrics and numerous other physicians’ publications, and with cerebral palsy.
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 doctors well experienced in tandem mass spectrometry. Testing is inexpensive, and insurance companies are beginning to cover the cost. Unfortunately, only a handful of laboratories in the world 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 comprehensive newborn screening available 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.
Goals
Save Babies Through Screening Foundation promotes its mission by the following objectives:
- Improve awareness of disorders detectable through newborn screening
- Improve awareness of the newborn screening blood test
- Facilitate communication among screening programs, support groups, and families
- Improve newborn screening guidelines and regulations
- Improve clinical identification of affected neonates
- Enhance resources for newborn screening testing; short-term follow-up care programs; and long-term follow-up programs for treatment development and research
- Promote national consistency among screening programs
HOME | ABOUT US | PRESS RELEASES | DONATE NOW | VOLUNTEER NOW
Contact
Save Babies Through Screening
for questions about the content of this site or
the Webmaster
for questions about technical issues related to this site.
Terms of use
for this site.