2012-02-14 19:19:11 -
WASHINGTON, DC - RPR - 02/14/12 - Congenital Heart Defect Awareness Day: February 14, 2012
Critical Congenital Heart Disease (CCHD) is an insidious killer of infants, and the most prevalent birth defect. Approximately 1 of every 100 babies : www.1in100.org is born with a congenital heart defect. CHDs are the leading cause of infant death from birth defects, claiming the lives of more than 4,000 babies in the U.S. each year. A simple, non-invasive test in the newborn nursery can help clinicians detect possible heart problems. Some babies born with a heart defect can appear healthy at first and can be sent home with their families before their heart defect is detected. Visit www.1in100.org
:
www.1in100.org for more information.
Annamarie Saarinen, the mother of Eve, a child born with a congenial heart disease, embarked on a two-year crusade to ensure every newborn in the United States is screened for heart defects for leaving the hospital. Starting with a multi-hospital pilot project in Minnesota, and leading to a federal recommendation from the Secretary of Health and Human Services to recommend adding Congenital Cyanotic Heart Disease (CCHD) to the Recommended Uniform Screening Panel for all 4 million babies born in the U.S. each year.
"It's really an incredible story of commitment and perseverance," said Jim Bialick, Executive Director of the Newborn Coalition. "She was able to do what very few thought could be done - and on a timeline that was lightening speed by national standards. Hundreds, if not thousands, of infants and families will benefit from her daughter's experience and her efforts."
Annamarie participated in more than 70 congressional briefings, authored hundreds of letters and clinical support documents for screening, and has since participated in state and federal workgroups working on state by state implementation of newborn heart screening in hospitals and birthing centers. In February, she will be presenting hospital Grand Rounds with her daughter's cardiology team in Minnesota, and will be speaking on the topic of newborn screening for CCHD at Cardiology 2012, attending by clinicians and medical experts from around the world.
"Six years in patient safety at the national level, I work on best practices that would have made a difference in my son's life, in the hopes of bringing better outcomes for other babies and families," said Mary Ellen Mannix, MRPE, founder and president, James's Project. "If Annamarie's efforts had happened ten years ago, they could have made that difference for the 40,000 U.S. babies touched by congenital heart defects each year."
To hear more about Eve's story and Annamarie's journey in celebration of Congenital Heart Defect Awareness Week (February 7-14) and CHD Awareness Day contact:
Interview Availability
Annamarie Saarinen 612.964.6728
annamarie@1in100.org
Additional Interview Sources:
Lazaros Kochilas, MD, Associate Professor, Pediatric Cardiology, University of Minnesota Amplatz Children's Hospital612-626-2941
kochilas@umn.edu
Darshak Sanghavi, MD Chief, Division of Pediatric Cardiology
University of Massachusetts Medical School
Office: (508)
856-4154Darshak.Sanghavi@umassmemorial.org
Pedro del Nido, Chairman, Department of Cardiac Surgery, Children's Hospital
BostonPedro.DelNido@CARDIO.CHBOSTON.ORG617-355-8290
Scott Grosse, PhD, Research Economist, Centers for Disease Control and Prevention (CDC)
sgg4@cdc.gov
Alex Kemper, MD, MPH, MS, Pediatrics-Primary Care Duke University Medical
Centeralex.kemper@duke.edu
Jim Bialick, Executive Director, Newborn
Coalitionjim@newborncoalition.org
Michele Puryear, M.D., Ph.D., Senior Medical and Scientific Advisor Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD),
301-451-2138michele.lloyd-puryear@nih.gov
Mark McCann, Director Newborn Screening, Minnesota Department of
HealthMark.Mccann@state.mn.us
Kristen Spyker, Founder, The Heterotaxy
Networkkristenspyker@yahoo.com
Mona Barmash, CEO, Congenital Heart Information Network
mb@tchin.org
View Release :
rushprnews.com/2012/02/14/one-baby-impacts-4-million-newborns
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Media Contact Name: Annamarie Saarinen
Media E-mail:
annamarie@1in100.org : mailto:annamarie@1in100.org
Media Phone: 612.964.6728
Media Web Address: www.1in100.org :
www.1in100.org
Company Contact Name: 1in100 Facebook Page
Company Web Address: facebook.com/1in100 :
facebook.com/1in100
Contact information
=====================
Media Contact Name: Annamarie Saarinen
Media E-mail:
annamarie@1in100.org
Media Phone: 612.964.6728
Media Web Address: www.1in100.org :
www.1in100.org
Company Contact Name: 1in100 Facebook Page
Company Web Address: facebook.com/1in100 :
facebook.com/1in100
