Craniosynostosis

[Strawberrybubble]

Hello, my DD has recently been diagnosed with Unicoronal Craniosynostosis, and will be having an operation at Birmingham Children's Hospital in a few weeks. Just wanted to know if anyone else had anything to share about their experience? Thank you.. x

Just bumping for you, as I know it's really rare.
Hoping all goes well for your daughter's op, BCH are utterly fantastic

Thank you Haba, appreciate it.. yes, I really hope it all goes well. So worrying x

A friends dc has had the op and is doing brilliantly. All the very best x

That's so lovely to hear, so glad their child is doing well after the operation :-). Nice to hear it from parents who have been through this. Thanks for sharing xx

My DD was born with unicoronal synostosis, so I have experience of this - albeit 15 years ago. We are pleased with the results, in the months after the op it almost looked like the op 'over corrected' her skull but it's looked better and better over time.

The 48 hours after the op were hard - 2 days of heavy duty antibiotics & pain relief upset her stomach a bit, so she was understandably clingy. Finding the time to get food for myself & have a shower was not easy, so take any offers of help from friends & family you can!

Recovery was amazingly quick for her though, she improved rapidly once the antibiotics finished & was discharged from hospital 3 days after the op, by which time she was already climbing on the windowsills in the ward to watch pigeons outside the window - so pretty much behaving like normal

If your DD hasn't already had the op - hope all goes well & if she has - hope she is recovering well