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When you have a child with a heart defect, you live with fear every day. And yet, you have to live your life and you have to lean into hope. -Diane Pickles
Diane Pickles admits that a little voice inside her head thought something might be wrong with the unborn child she was carrying. The year was 1994 and she and her husband William had a healthy three year old son at home when an ultrasound revealed that their baby had Hypoplastic Left Heart Syndrome, meaning that he had half a heart. Doctors suggested a late term abortion, but that was not an option for the couple. Instead: they picked option 2: a series of experimental surgeries which up until then, had shown little success. Today, their son Jake is 27, making him one of the oldest patients with this heart defect in the world. Diane has made it her life’s mission to assist and educate heart families and to forward research that maps genomes which cause congenital heart defects. The Program Director of Project Singular at Additional Ventures, she has also worked tirelessly for the American Heart Association, was appointed to the board of the Directors of the American Board of Pediatrics, and was a key player in successfully passing legislation to end smoking in restaurants. In this interview, Diane opens her heart to talk about what it’s like to lovingly raise a child with only half a heart. Born and raised in faith, Diane follows her father’s 10 Guidelines for Life which he wrote on his 70th birthday. Her favorite is #10: Share your gifts, be heard, give back. Says Diane: I have always believed that if I can make this path easier for someone else, I’m gonna do it. For 23 minutes of inspiration, just hit that download button. #heartdefects #specialneedschildren #humangenomes