Mothers in Hampton Roads are fighting to change that by starting a local 'Zipper Club.' It's named after the zipper-like scar that remains on the chests of their children following the open heart surgeries needed to reroute their backwards hearts.
Christine Tocarzyck had no idea her son Zach had a congenital heart defect until his oxygen plummeted moments after his birth.
"His arteries were reversed. His aorta was in the wrong location," Tocarzyck said.
In pictures, she points out his zipper-like scar from his surgeries. This is what little Zach has in common with 12-year-old Easton Shaw. Easton's mom Lisa Shaw, along with Tocarzyck, want to expand the "Zipper Club."
Shaw still hates thinking about when Easton went into cardiac arrest as he was leaving the hospital.
"His color kept dropping. Next thing I know, he stopped breathing," Shaw said.
Shaw fought for new legislation in Virginia that says babies must have their oxygen tested before leaving the hospital. Oxygen desaturation is a major sign of CHD.
Zach is now two and will need a heart transplant at some point. His condition already makes him self-conscious.
"Because I'm different...'Cause I'm always small," Zach said.
These moms are determined to raise more money for CHD research through their zipper club and help protect more parents from having broken hearts.