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Media Kit
Background InformationWritten by Lisa Borman A disturbing, and little-known statistic: one in every 100 infants
is born with a malformed heart. More babies are born with CHD
than with spina bifida, Down's syndrome and hearing loss. Yet, heart
defects are sometimes overlooked and not routinely diagnosed in
newborns." THE UNTOLD STORY: This is a story about American children dying. Amazingly and
most unfortunately, it's one most people have probably never heard. This is about the most common birth defect, the one that kills more
infants each year than any other single cause. Forty thousand babies are born with a Congenital Heart defect. Although some babies will be diagnosed at birth, sometimes the
diagnosis is not made until days, weeks, months, or even years after.
In some cases, CHDs are not detected until adolescence or adulthood.
Delayed diagnoses can sometimes have life long, or even dire
implications for those affected. What can be done? Those asking this question the loudest include a unique on-line
community of families affected by congenital defects. Pennsylvania mother Mona Barmash started The Congenital Heart
Information Network (www.tchin.org) in 1996 to reach other parents
like herself whose children's complex and/or incomplete heart anatomy
required medical procedures and high risk open-heart surgeries. Today, thousands of parents and patients-turned-activists are
working on the local, state and national level to improve detection
and treatment for congenital heart defects. Each has a story to tell -
and a mission to accomplish. EDITORS NOTE: Contact Mona
Barmash (215) 627-4034 to schedule interviews with patients, their
families or medical professionals. |
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