Congenital Heart Defect Awareness Week Feb. 7-14

FALLBROOK – Congenital Heart Defect Awareness Week is Feb. 7 – Feb. 14. It serves as an annual awareness effort to help educate the public about congenital heart defects.

Most people are unaware that congenital heart defects (CHD’s) are America’s and every other countries number one birth defect.

Nearly one of every 100 babies are born with a CHD. Each year nearly 40,000 babies are born in the United States with a CHD and thousands of them will not reach their first birthday and thousands more die before they reach adulthood.

Kim Russell of Fallbrook explained that her son, Stephen, was born with a “very rare and serious congenital heart defect.”

“Congenital heart defects occur in the early stages of pregnancy, when the heart is forming,” said Russell. “In Stephen’s case the right side of his heart never grew leaving him with only a single ventricle. While his condition is not curable, a serious of three open heart surgeries (two of which he has had) are needed to survive.”

Russell said, “[Stephen] underwent his first open heart surgery at just nine days old and his second at four months. Despite all he has been through in his 22 months, he is a bright-eyed, beautiful boy with a smile that can light up a room.”

The Russells have been very pleased with the expert help they have received from Rady Children’s Hospital.

“We love Rady Children’s Hospital and all they and the Ronald McDonald House has done for our family,” said Russell. “If I had been born with this defect, I would not be alive. Currently the oldest survivors are in their late twenties!”

Russell said it is important to her that CHD awareness is brought to the community.

“In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD,” she explained. “Research is so important and funding is so essential to it. It is amazing to read how far treatment and care has come for children like Stephen. Thirty years ago, most babies died and now with multiple heart surgeries, these “Heart Heroes” like Stephen are reaching adulthood.”

“In 2012, California became the ninth state to pass a heart defect screening law that benefits thousands of newborn babies,” said Russell. “Starting in July of 2013, all newborns delivered in a birthing facility in California are given the pulse oximetry test to identify critical congenital heart defects. Pulse oximetry is a non-invasive test that checks blood oxygen levels and low levels indicate a potential life-threatening heart defect that might otherwise go undetected. This law passed because fellow heart moms and dedicated advocates for CHD’s made it happen.”

To support research into congenital heart defect research, visit the Rady Children’s Hospital website at http://www.rchsd.org (click on “Donate Now” and use drop-down menu to select “Heart Institute”) or see the Children’s Heart Foundation site at http://www.childrensheartfoundation.org.