what do we do now?
Very few things rip the rug out from underfoot like an unexpected diagnosis. A parent struggling with processing new information, can often feel like they are making life altering decisions while blind. It takes more than a few heartbeats to settle in, become acquainted with the new condition, and settle into life as a critical member of your child’s care team. With a local support group willing to make themselves accessible, newly diagnosed parents can build on what we’ve learned and move forward faster than Killian’s parents could seven years ago. When we keep in touch and move together, each family’s struggle is a building block that can be used to make things slightly better for the next unexpected heart defect.