Diagnosis of Craniosisynostosis?

Diagnosis of Craniosynostosis

Hello, long time reader, first time caller. Father to 13wo boy, referred to paediatric neurosurgery for Craniosynostosis.

Has anyone gone through previous? Mum is pretty upset by all this and trying to build some context to support.

Obviously all the answers in our case will come from health care providers but looking for lived experience from others, was this a definite surgery route or did you get other care recommendations?

UK