Congenital Heart Defect Awareness Week Feb. 7-14

By Newsroom 12:40 pm February 13, 2014

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 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 www.childrensheartfoundation.org.

One Response to Congenital Heart Defect Awareness Week Feb. 7-14

  1. Kate McCrae Reply

    May 22, 2014 at 3:54 am

    Stephen looks just like the sweet, brave little guy that he certainly must be! I can understand why his parents are so grateful to the local Cardiovascular staff!

    I was born in Fallbrook during early 1979 (With ToF, and a reproductive condition, the latter of which was discovered during 2009), and I was the first heart baby who was transfered from Sharp to Children’s in San Diego (I hope that I remembered the exact transfer correctly). So many local heart babies had been dying in before I’d been born.

    I was only about 4.5 days old when I had my first surgery, and, during the past 35 years, I have had more surgeries, and caths, than I can count on both hands, but I am still here. I received a Porcine Valve early on during my life (1982?), a Homograph Valve during 1988, a pacemaker during 1990 (Re-implanted, along with a pouch, during 1990), a Stent during 2000, a new pacemaker during 2003, the newest pacemaker last June, and a Melody Valve right before my 35th Birthday this year! (Those last two surgeries were performed at U.C.S.F., but all of the others were performed at Children’s…in San Diego (My parents were not at all wealthy, so the Ronald McDonald house helped…a lot!).

    During my life so far, I have experienced school, 4.5 years of college, over a decade of volunteerism, etc., and, most recently, participating in a local production of "Les Miserables" (I was out for most of it with the Flu of 2013, but I was able to perform a few times, anyway, and that show is not easy to perform!)

    All of that just goes to show anybody that so many heart patients have had, and continue to have a good chance at living exciting lives.

    I’m so glad that Fallbrook is supporting Heart Week. I feel proud to have been born in a town that cares about heart patients, and I feel grateful that San Diego’s Children’s Hospital spoiled me for so many years (That particular hospital’s staff really made me feel comfortable; the staff always went above and beyond…just for the young patients. I still have the teddy bear that I received before my 2003 pacemaker replacement surgery).

    I hope that you have the best future ever, Stephen! You have a supportive family, a supportive town, and a cheerful attitude, so I know that you’ll be doing something great when YOU are 35 (2047)! :)

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