Heart Experience Journal – Nigrelli Family | Boston Children’s Hospital

All you want is to make your child happy and keep them safe, and have them be healthy. And when any of that is in jeopardy, you feel powerless. Our daughter had open-heart surgery just before her second birthday at Boston Children’s Hospital to repair an atrial septal defect. As a dad, you know, wanting to fix, wanting to be orderly, wanting to take control, there was a huge element of that, that you needed to give up. This was one of those instances where we got news that there was no other way to fix this problem other than to have the doctor perform surgery. It doesn’t seem real, and it didn’t seem real for a while. I think we read one in a hundred kids are born with a heart defect of some sort. To be that one was so lonely and so scary. When she was in the hospital, that was probably the toughest, but we luckily got through it. We went in on a Wednesday, and we were home by Sunday. She was just a total superstar. I’m proud of her for a million things, but certainly that was a time where I was like, “Wow, this kid is really really amazing.” We actually sought out the help of a child psychologist She helped us separate what this experience would be in our minds versus in Avery’s mind. And she walked us through how to prepare her. There were certain things we could do. We could get her a doctor’s kit. And she could see the stethoscope, and she could see the blood pressure cuff. And she could see the thermometer. What was the scariest or most terrible part for us would likely not be the case for her. You know, what would really bother a two-year-old might be the tape holding a wire to her skin, or for Avery, it was the blood pressure cuff on her ankle that would go off every so often. Those were the things for her, those were deal breakers. The rest of it, she could handle. I think there’ll be a point in time when she gets a little bit older that we will be able to explain in to her. But, for now, she is very much aware that hearts can be broken, and that hearts need to be fixed. Just has heard her playing with her toys, and she’ll say to like her doll or something, you know, “Okay, we have to take you to the heart doctor cause your heart is going crazy.” By two years old, she’s done something so big and so brave. You know, a couple of days in the cardiac ICU will change your life forever.

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