Save Babies Through Screening Foundation Supports Maine’s New CCHD Screening Law

Last month a Critical Congenital Heart Disease screening bill passed the Maine legislature without veto from Governor Paul LeGage. Grassroots efforts by advocates like Megan Allen were instrumental in bringing the new law into being. For the last two years, Allen has worked tirelessly with representative Henry Beck to raise awareness about the importance of mandatory CCHD screening (also referred to as pulse ox screening).

Allen acknowledges Beck as a crucial early supporter; immediately grasping the importance of CCHD screening when few others were listening.
 
“After reaching out to many state representatives, senators, and house members, ONE of them listened to me and took me seriously. Representative Henry Beck listened to my plea to make Pulse Oximetry testing mandatory for all newborns in Maine, and after a failed first go-around through legislation, the bill has finally passed unanimously through House and Senate and is now law,” Allen said
 
Allen’s connection to the issue is a personal one. Her daughter Ava was diagnosed with a congenital heart defect via ultrasound, just 20 weeks into Allen’s pregnancy. She knows from first hand experience that CCHD screening is essential for providing newborns with the best chance of a long and healthy life.
 
“Shortly after I had Ava I started connecting with the CHD community on Facebook. I had no idea how common congenital heart defects were. I met families in all stages of their journeys with CHD, and sadly I met many families who had lost their babies to heart defects. I soon realized that lots of heart defects were not found during the 20 week ultrasound, and I heard about Pulse Ox testing. At the age of 20, I knew that a simple test could, and would save lives if it was preformed routinely on newborns. It was absurd to me that such a simple, cost effective test was not already a standard newborn screening,” Allen said.
 
Maine is now the 26th state to have enacted CCHD screening laws. Awareness of this issue has been growing steadily since 2011, when Indiana became the first state to pass legislation. Later in 2011, the federal government made a recommendation in support of screening, which helped to raise more awareness for the issue. Currently, screening legislation is awaiting approval in several other states.
 
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
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