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Heart to Heart
Organization promotes awareness of congenital heart defects

 
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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.