craniosynostosis

‘Excuse me, my child has a question about your face.’ Others pulled their kids away like I shouldn’t be looked at.’: Woman with Craniofacial differences reminds us to use ‘kindness’ to approach uniqueness

“In middle school, kids started to stare and ask, ‘Why does your face look smooshed? What’s wrong with your nose?’ My mom would tell me how pretty I was and I’d always say, ‘You’re my mom, you have to say that.’ I’d spend so much time buying cuter clothes, different makeup, more jewelry to overshadow my face. But when I stripped it all down, my confidence was gone.”

‘What did I do wrong to cause this sweet blonde-haired, blue-eyed boy to suffer like this?’ He woke up so smiley that morning. My husband and I were silent. ‘It’s time,’ the team said. The doors shut behind him.’

“Ten minutes went by…then 30 …then 45. I was in a total panic. Instead of the screen showing he was waking up from anesthesia, it said he was still in the O.R. There was a look of concern in his surgeon’s eyes. ‘For some reason, half of his skull expanded faster than the other.'”

‘Why isn’t she letting me see my baby? I want my baby!’ Our nurse was stalling, looking for something. But what? I felt sick.’: Mom’s newborn diagnosed with Pfeiffer Syndrome, wouldn’t ‘change her uniqueness for the world’

“As far as we were concerned, we were going to give perfect to a perfect, healthy little girl. Instead, she was born with unusually low ears, a cone-shaped head, and a squeezed brain. NO ONE at our hospital had seen anything like it. I was in shock and kept thinking, ‘Why her? How am I supposed to take care of her?!’ I didn’t feel prepared or strong enough for this. I was grieving the loss of a child, the one I thought I was having.”

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