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Mona Barmash wants never to see another young athlete
die on a sports field as the result of an undiagnosed
heart disorder. The mother of a college student with
complex congenital cardiac problems, Barmash believes
Valentine's Day is a prime opportunity to push before
the public what has become her personal crusade of advocacy
for early detection of heart defects.
Feb. 14 has been proclaimed Congenital Heart Defect
Awareness Day by governors and mayors in at least 28
states. Last year, 44 states had some type of involvement.
Sponsored by the Congenital Heart Information Network,
which Barmash founded in 1996, the national recognition
day was the idea of heart network member Jeanne Imperati,
who also has a child with congenital heart defects.
This year's observance has gained the support of a plethora
of agencies, including Children's Hospital of Orange
County and the University of California, Davis Children's
Hospital, Children's Medical Center of Dallas and Children's
Hospital of Austin in Texas, HeartLight University Medical
Center in Arizona and Primary Children's Medical Center
in Utah, among others.
"Valentine's Day is the perfect day to draw attention
to congenital heart defects," said Barmash, of
Yardley, Pa., who aims to widen awareness of CHD. The
heart network is an international nonprofit, all-volunteer
coalition of parents, heart patients and professionals.
The group's goals are to increase awareness, reduce
childhood deaths and increase funding for research into
the causes and cures of CHD, Barmash said.
Barmash said the heart network serves close to 3,000
CHD patients who participate in discussion forums and
support groups. Its Web site (www.tchin.org) receives
up to 50,000 visitors each month. Besides the chat rooms
and message boards for parents, families, adults with
CHD and health professionals, the site offers a comprehensive
collection of resources, information and links. A lengthy
list of links and resources for nurses is another useful
feature. The heart network stands out among the proliferation
of such organizations and Web sites because it has invited
input from nurses and doctors involved in cardiac care.
Elizabeth Tong, MS, NP, RN, FAAN, a clinical nurse
specialist in pediatric cardiology at the University
of California, San Francisco Medical Center, is one
of two nurses on the heart network's nine-member advisory
board. She believes the inclusion of health care professionals
adds depth and credibility to the heart network. Tong's
contributions have varied, from helping produce a booklet
on heart defects for parents to reviewing Web content
for reliability and readability. She also participates
in chat rooms, answering questions as well as asking
them.
"I've been involved in a sort of reverse chat
room," Tong said, "asking adults with CHD
what their lives are like outside the hospital, so as
professionals we can learn how to prepare pediatric
cardiac patients" for life after hospital discharge.
As agencies and health care facilities around the United
States observe Congenital Heart Defect Awareness Day,
they will help promote Barmash's original desire that
young people with cardiac problems be correctly and
quickly diagnosed. She hopes, too, that more individuals,
families and health care professionals participate in
the supportive community of the heart network.
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