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Craniosynostosis - your *good news* stories please!

(1 Post)
ThinkPinkStink Mon 23-Jan-17 19:31:47

DD is 14 weeks old and has an odd shaped head. If you look at the craniosynostosis page on Wikipedia, it's almost identical to the example photos.

I took her to the GP last week, they were unsure so asked for some time to research/speak to colleagues. Today I got a voicemail from them (annoyingly I was on the phone when they called) to say they'd call me on Friday to discuss 'what happens next'.

Friday feels like a billion years away. I've read threads on here, and various articles online, and I know that the chances are that DD is just a bit wonky-of-head... and even if it is craniosynostosis surgery is not always required and even if it is, is often successful.

I don't know if it's coincidence (it probably is) but she's been grisly this week, and has learned a new horribly high pitched cry (which sounds terrifying, especially when I'm scared that her skull is causing her issues).

I'm just terrified of losing our lovely little girl.

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