“They didn’t know in his first 2 months of life, he came close to death so many times. They didn’t see me standing outside his hospital room, frozen as the medical team performed chest compressions. They knew he was different. They just didn’t know why.”
‘Look, the weird kid is back.’ They talked about him as if he was an exhibit at the zoo.’: Mom to son with Goldenhar syndrome says ‘we are more alike than we are different’
‘When you hear, ‘twin one is fine, but…’ your life is about to change. When I finally saw him after his birth, I could hardly process the absence. It was a blank, featureless canvas.’
“When I woke hours later, my partner and I were met by the serious face of one of the pediatricians. There is no way to explain how I felt at that moment, other than devastated. I was convinced I must have done something during my pregnancy to cause this.”
