Stephens Media
Stephens Media
More than 35,000 babies in the United States are born annually with congenital heart defects — structural problems that show up in the interior walls of the heart, the valves inside the heart or the arteries and veins, according to the National Heart, Lung and Blood Institute.
Dealing with this common birth defect, affecting eight out of every 1,000 newborns, can be confusing, consuming and emotionally taxing. Not wanting local families to struggle alone, Hawaii Island Kardiac Kids formed in October 2010, said member Grace Miyata.
Hawaii Island Kardiac Kids is a “very grassroots” support group for parents and children dealing with congenital heart defects.
Parents provide each other with emotional support, encouragement and coping strategies that help them to support their child through surgeries. The group’s teen mentorship club allows older children to talk freely.
If you’re a teenager with a bad heart, it can be hard to talk about the scar running from your neck to your stomach, Miyata said.
“This group gives kids a place were they don’t feel so alone and can feel normal. They have a bond that you cannot explain,” she said. “Through their own club, the teens have their own officers, feel like they can talk to people who understand what they are talking about and a chance to make in impact in their community.”