Craniosyntosis

[bellabingbong]

So my little man who is 7 months old looks like he will need craniosyntosis surgery. Has anyone else had this and can give me real advice on what it's like pre and post operation?

Or anyone not had the operation when their child was diagnosed?

I'm freaking out 😩😩😩

Hi bella

Terrifying isnt it?

Ds2 was diagnosed with metopic craniosynostosis at 3 months. He didn't need surgery in the end so I dont have any experience of that but there are other Mumsnetters on here whose children have (Strawberrypenguin is one) so hopefully they'll be along shortly.

We did do all the pre-op counselling, met the neurosurgeon etc so I know a bit about the "theory". Where is your lo going to be operated on? Did you know you can opt to be referred to one of the 4 paediatric centres of craniofacial excellence in England if you want to be (assuming you're UK based)?