"We were terrified. We had never heard of this diagnosis. We had no idea that it existed and unfortunately the OB and the cardiologist here in Tennessee knew about the condition but there wasn't anything they could do."
"We were basically waiting for her to die. It was one of those situations where you want to do as much as you can. You want to advocate for yourself and your child as much as you can, but we literally had no idea what to do because it was such a rare diagnosis."
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