FOR IMMEDIATE RELEASE July 9, 2006
Joined by the Heart
IRVINE, CA - Braedon Kamm and Rebekah Yospe are typical 6-year-olds in many ways. Braedon loves dinosaurs, Rebekah loves to dance, and both love to pick on their younger siblings. But, unlike most of their peers, they were each born with serious heart defects; Braedon with only half a heart, Rebekah with a heart that is backward and on the wrong side of her chest.
And, they are not alone.
Sunday, July 23rd, they will be joined by 60 other youngsters born with heart defects and their families at the 6th Annual Heart Picnic at Mason Park in Irvine from 11am to 3pm. Food, music and entertainment will be provided, while local fire departments will allow a close up look at their vehicles and equipment.
Families from all over California and nearby states plan to attend this event sponsored by California Heart Connection, a support network inspired by Braedon and Rebekah. This nonprofit, 501(c)(3) organization was founded by their mothers, Debbie Hilton-Kamm and Karin Yospe. Based in Irvine, it is the only support network that serves children and adults throughout California who are affected by congenital heart defects.
"Karin and I were both fortunate to find accurate information about our children's heart conditions and have a lot of support from family and friends," said Hilton-Kamm. "Not all families are so lucky."
Braedon and Rebekah have been very lucky. Braedon's heart defect was discovered before he was born during a routine ultrasound. He has Hypoplastic Left Heart Syndrome (HLHS), a condition in which the left side of the heart is underdeveloped. It is fatal within a few weeks of birth without immediate surgical intervention.
His parents were given several options: terminating the pregnancy, bringing him home to die, listing him for a heart transplant, or having him undergo a series of three open-heart operations. They opted for the 3-stage procedure to reroute his circulatory system, allowing his heart to work using just two of its four chambers. At only one-week-old, Braedon underwent his first open-heart surgery. He had the second operation at six months, and the final stage was completed just before his second birthday.
Rebekah's heart condition went undiagnosed until after birth, even though her heart is on the wrong side of her chest. Fortunately, she did not require immediate medical care. She has Congenitally Corrected Transposition of the Great Arteries (cc-TGA), where her great vessels are incorrectly connected, but her ventricles also switched positions. This can cause too much blood flow to the lungs, and not enough to the body. Rebekah may need surgery when she is older to close a hole in her heart.
The organization's goal is to help families find resources and provide much-needed emotional support. "We connect our members through events, an online support group, and matching of those with similar diagnoses. We have also created a Resource Guide and downloadable forms for patients and physicians that are available on our web site," said Yospe.
The web site also contains an "In Memory" page which pays tribute to just a few of the children who have died since the organization's inception - a solemn reminder of how serious these heart defects can be.
According to the American Heart Association, heart defects are the most common type of birth defect, occurring in approximately 1 out of every 100 births, or about 40,000 babies each year in the U.S. alone. The causes of most heart defects are unknown.
For more information on California Heart Connection or to make a donation, see the web site at www.caheartconnection.org or call 949-653-6421.
Contact: Debbie Hilton-Kamm, President, California Heart Connection
Web site: www.caheartconnection.org
Editor's note: Contact Debbie Hilton-Kamm to schedule interviews with heart patients, their families or medical professionals.
-- END ---