After Eve’s diagnosis and rapid decline into heart failure at 2 days old, a strange series of coincidences led me to a place that has been a lifeline for our family. BabyCenter.com hosts hundreds of community message boards. Another mother got word to me that there was a relatively new board that had been started for families of babies and children with heart problems.
The counsel, wisdom, intelligence, clinical data and resources we found here were amazing. More importantly, the comraderie and friendships have saved us. This is where the journey toward awareness and advocacy started for me. I just wanted to share my gratitude – and humility as we’ve often taken more than we’ve given to this wonderful community of heart families. I continue to be engaged and strive to do more whenever possible.