Happenings Magazine – By Julie Korponai, April 2014
The elation caused by the birth of a child quickly deflates when doctors bring bad news. Such was the case for Jonathan and Amanda Evans, when on April 25, 2012 doctors said their daughter, Vayda, was born with a heart murmur. That murmur sparked doctors to perform a pulse oximetry screening. The screening revealed Vayda had Tetralogy of Fallot, a condition in which several congenital heart defects occur at once, creating a malfunction of the heart. “It scares me to think if she didn’t have the murmur, what could have happened,” says Amanda.
Many babies are not that lucky. The Centers for Disease Control estimates that each year United States hospitals discharge about 300 newborns with an unrecognized Critical Congenital Heart Defect (CCHD). According to the American Heart Association (AHA), Congenital Heart Defects occur in eight out of every 1,000 live births and account for 27 percent of infant deaths due to any birth defect. The statistics are terrifying, yet 17 states, including PA, do not require pulse oximetry screening as part of the testing newborns receive before leaving the hospital. New research suggests that when all infants are screened using pulse oximetry in conjunction with the routine practices, CCHD can be detected in over 90 percent of newborns.
After the shock wore off, the Old Forge family reached out to the American Heart Association for more information and support about their daughter’s condition. AHA put Amanda in touch with PA State Rep. Karen Boback, Ph.D. who put together House Bill 1420 that would require pulse oximetry testing for all newborns. In November 2013, the bill passed the House and heads to the Senate for consideration.
At 6 months old, Vayda underwent successful open-heart surgery at the Children’s Hospital in Philadelphia. “It was the most gut-wrenching experience of my life,” says Amanda. “The hospital staff and doctors were great, giving us updates every 15 minutes throughout the five-hour surgery, but you still can’t prepare yourself for anything like that.” The surgery repaired her ventricular septal defect (hole between the right and left ventricles) and corrected the narrowing of the pulmonary outflow tract (the valve and artery that connect the heart with the lungs).
Today, 20-month-old Vayda has a three-inch scar across her chest that serves as a constant reminder to her parents of what a simple test helped them discover. Though the spunky toddler won’t ever remember the surgery, Amanda is prepared for when she asks about the scar. Armed with a heartwarming children’s rhyme book, Zip-Line, written and illustrated by a father whose daughter had open-heart surgery, the book answers the question “How did that line get there?” Vayda will continue to have yearly follow ups with a cardiologist.
