craniofacial synostosis

[ania102]

Hello all...

I need some help!
I am looking for parents who opted out of the craniofacial surgery.
My little girl was supposed to have the op two years ago, the father objected and despite two court orders (one from the Family Court and the other from The High Court) GOSH, after taking father's views into consideration have taken my little girl off the waiting list, having no considerations to my own or the Court Order!
The fight continues but I would love to get in touch with parents who chose against the surgery, how their child had been affected, has the deformity worsened or stayed the same, do the children get teased or laughed at at school...etc.
Please get in touch, I'd be so grateful for any advice as I'm at my wits end :(

Hi ania

I'm not sure this will be of much use to you, because our case is somewhat different but anyway it will bump your thread.

My ds2 has metopic craniosynostosis. We didn't "opt out" of surgery" as such, but agreed with the neurosurgery team that it wasn't necessary because the deformation (and predicted deformation) of his skull was visably minimal. In his case this is because all his sutures closed early (but not too early and his metopic suture only closed a little bit early) so although his skull is very ridged this is hidden under his hair. The bulge in his forehead, which was very prominent when he was 3-6 months is not so now, as the rest of his skull has grown to fit. He does have an impressive scowl though.

Anyway, this post is just to say that you shouldn't assume that any deformation of your dd's skull will necessarily grow worse over time, it may not, especially after the age when the sutures would naturally be closed anyway. You'd need to ask a neurosurgeon about that, and also about any potential associated problems.

I am not clear why GOSH are refusing to operate, even with the court orders, but be aware that there are 3 more centres of crainiofacial surgery excellence in the UK - at Oxford, Birmingham and Liverpool - and you can ask to be referred to any of them. Perhaps one of them would be willing to operate?

HTH

Oh, forgot to say, ds2 is 9 now so we are very sure he'll never need surgery.

Do you want the surgery? It seems crazy that both GOSH and yourself were in favour, and now it's been mothballed because your ex says no.

Is there a history of him using your DD to create battles? Is surgery considered to be the best option for DD?