Delays And Downtime Prove Deadly For Newborn Screening Programs

Newborn screening programs across the nation rely on fast detection to spot and treat rare infant disorders and diseases. In many cases hours, not days, can be the difference between life and death for a newborn with a rare undetected condition. Such was the case for Noah Wilkerson, born in Colorado in 2009, on a Friday. His blood sample was drawn the morning after his birth, but due to hospital delays, and the fact that Colorado testing labs were closed on weekends, Noah’s sample waited 48 hours before being taken by courier to the testing facility. On Tuesday of the following week Noah’s mother Sarah was alarmed to find her son unconscious and blue. After being rushed to the hospital, and an hour of vigorous resuscitation attempts, the hospital pronounced Noah dead at 9:47 pm. When Noah’s newborn screening lab results came back the very next day, it uncovered that Noah was born with a rare genetic disorder known as MCAD deficiency that inhibits the body from breaking down fats. For some perspective on this devastating loss, another Colorado child was born with the same MCAD deficiency, but unlike Noah, he was born on a Tuesday during normal Monday - Friday lab hours. That child is now a healthy toddler.

A recent report by the Milwaukee Journal Sentinel uncovered that 27 states with newborn screening labs, do not process blood samples on weekends. State health officials and lab administrators blame lack of funding and resources as the primary reason for being unable to test on the weekends. Proponents of expanded testing hours are quick to point out that this can be a very penny wise, pound foolish approach. A 2004 study conducted by the Centers for Disease Control and Prevention calculated the average lifetime medical costs resulting from mental retardation, that could have been prevented by Newborn Screening, at around $1 million. Doctors estimate that approximately 1 in every 800 infants will be born with a serious or life-threatening condition, that only along with timely detection can be effectively treated.
 
The Save Babies Through Screening foundation is actively advocating to eliminate screening delays. To learn more, or to get involved, please visit us at http://www.savebabies.org
 
About the Save Babies Through Screening Foundation
 
Comprised of volunteers whose lives have been touched by newborn screening (NBS), Save Babies Through Screening Foundation is the only advocacy organization in the country dedicated to Newborn Screening. SBTS aims to educate parents, pediatric healthcare providers and policy makers about available comprehensive Newborn Screening, the importance of obtaining positive or other test results requiring follow-up actions within five days of birth and the importance of prompt confirmatory testing and treatment/management when required. The Foundation’s mission is to ensure that every newborn in the U.S. be screened successfully, effectively and comprehensively.
 
Save Babies Through Screening Foundation programs are supported by public contribution’s that help us deliver vital education, community services, and advocacy programs free of charge. Every gift, whether large or small, helps us protect children from the effects of these detectable and treatable disorders.
 
CONTACT: Save Babies Through Screening Foundation
http://www.savebabies.org/contact.html
P. O. Box 42197
Cincinnati, OH 45242
Toll Free: 1-888-454-3383
 

Contact Information

Jill Levy-Fisch

President

Save Babies Through Screening Foundation

Contact via E-mail