Newborn Screening Family Stories:
My family calls me "little big heart." I've had four open-heart surgeries to help treat my congenital heart condition, tetralogy of Fallot, which causes holes in the heart as well as other problems that reduce oxygen to the body.
Identical twins are supposed to be identical, aren't they? Because my sister was healthy, and we were born before newborn screening included pulse oximetry, it took doctors weeks to diagnose my condition.
My parents were so excited to bring their twin girls home from the hospital. After several weeks of settling in, my parents noticed that my skin, nails, and lips would turn blue, and I would have periods of inconsolable crying. These symptoms were clues to the doctors that I may have a heart defect. At just two months of age, I had my first open-heart surgery. Surgeons weren't able to repair my heart fully and when my symptoms returned at the age of two-and-a-half, I required a second open-heart surgery. Since then, I've had two additional heart operations. Now in my early 30s, I hope for fewer surgeries as medical technology advances.
For some babies, a delay in detection of heart defects can cost them their lives. I'm lucky; my story could have easily been a tragedy, and my sister would have grown up without her twin. In 2013, Minnesota added pulse oximetry, a simple screening method that measures blood oxygen levels, to the newborn screening panel. The test can help detect the most deadly heart defects before babies even leave the hospital.
My family calls me "little big heart" and I live up to it by finding ways to share my story with others and help them overcome the challenges of heart disease. I'm a Go Red for Women Ambassador and a volunteer with the American Heart Association, both of which provide me with continuous opportunities to raise awareness about heart disease. I'm so proud that Minnesota screens newborns for critical congenital heart disease. Heart defects are the most common birth defect, affecting 1 in 100 babies, and now each of those babies has a better chance at a healthy life through early identification.