WESTFIELD, N.J., Feb. 12, 2001 (PRIMEZONE) -- An international group of families is asking for help in recognizing and curing the most common, most deadly, yet perhaps least-known birth defect.
Congenital heart defects -- malformations, holes, bad connections, weak or missing valves, chambers or vessels -- strike an astonishing 40,000 babies every year.
One in 100 babies (compared to 1 in 900 with Downs Syndrome or one in 2,000 with spina bifida) is born with a malformation of the heart -- some so minor it goes undetected for years, others requiring extensive surgery. There is no known cause or prevention, but early detection can ensure proper surgical intervention.
"The birth defects most people know about affect far fewer children, yet are part of routine screenings," says Mona Barmash of the Children's Health Information Network (tchin.org), an international on-line community of families affected by congenital heart defects (CHD).
Each year in the United States, about 1,500 infants die from heart defects. 24 other countries have better survival rates.
Each week somewhere in the U.S., a high school athlete dies on the playing field, the result of an undetected heart defect.
"A Day For Hearts"
Forty five states and dozens of counties and cities have declared Valentine's Day, February 14, "Congenital Heart Defect Awareness Day."
The brainchild of Connecticut resident Jeanne Imperati, mother of 14-year-old Matt, CHD Awareness Day is being marked throughout the U.S. with proclamations, special events for heart children and their families, and blood drives.
Says Wendy Von Sosen of Contra Costa, California whose 2-year-old son Jack was born with Hypoplastic Left Heart Syndrome, "CHD can strike anyone, any family, from any background. By increasing awareness and education about CHDs, we hope to improve early detection and screening as well as increase funding for research into the causes and cures."
In Sunriver, Ore., Sara Farina has organized a blood drive in memory of her nephew Spencer Cole Smith, who passed away a year ago, 11 days after his birth, despite heroic surgical efforts to correct his CHD.
AnneMarie Sarvis, whose 6-year-old son Anthony was born with Tetralogy of Fallot and Pulmonary Atresia, has organized a CHD Awareness gathering at Rainbow Babies & Children's Hospital in Cleveland this weekend. More than 350 families and their heart children attended, to pay tribute to the doctors and nurses who have cared for them.
Utah Governor Mike Leavitt signed his state's proclamation for Congenital Heart Day in the company of many heart families and children, and organizer Lisa Erickson who was born with Tricuspid Atresia in the 1960's. "As treatments and surgical techniques continue to improve, more CHD kids survive well into adulthood," she said. Ms. Erickson has had three open heart surgeries and may soon be a heart transplant candidate.
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CONTACT: Children's Health Information Network
Mona Barmash
(215) 493-3068
mb@tchin.org
Borman PR
Lisa Borman
(908) 233-8800.
lisa@bormanpr.com