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A MOTHER'S STORY

When my daughter was just 5 years old, she was running up a snowy hill at pre-K recess at her school. When I went to pick her up that afternoon, the teacher on duty told me my daughter was experiencing what she could only describe as severe chest pains just a bit earlier, and they were about to call me. The teacher attributed it to heavy boots trudging through the snow and my daughter just getting over a cold, but mentioned it was worth telling the pediatrician.

We brought my daughter to our pediatrician the very next day. All seemed fine but as a precaution they sent us to a local hospital for an EKG. When days passed and we had not heard further, I assumed good news until our doctor called. There was something wrong with the EKG and they advised us to see a cardiologist. I was shocked and scared and had no idea what to expect. We immediately went to Children’s Hospital of Philadelphia (CHOP) where they ran an EKG that was perfectly normal. Turns out the local hospital had just made a mistake! I was so relieved, but would soon learn that most AAOCA patients have normal EKGs and the condition may only be discovered through an echo. When they ran my daughter’s echo we did not expect to hear that anything was wrong, but the images indicated she likely had a right anomalous coronary artery. The rest of our visit that day was a blur. I remember trying to drive home hiding tears of what I had just learned. Would she need surgery? Is she going to be okay? The questions and anxiety were terrifying, but in a serendipitous way the EKG mishap at the local hospital is what led us to discover my daughter’s anomaly. She later had
in-depth testing and a cardiac MRI at CHOP, which confirmed her anomalous right coronary artery.

Today my daughter is a thriving preteen who dances five days a week and is the captain of her dance team. She is currently observed through CHOP and at this time has not had surgery for a variety of reasons. We are hopeful we can continue this way and make sure she stays safe, all while balancing her AAOCA diagnosis. It is not an easy road at times and does produce quite a bit of anxiety for all of us, but we have faith in our care at CHOP and what we hope to find out through future studies and efforts around AAOCA.