craniosynostosis?

[fruitcake]

One of neighbors' 8 month-old twins has just been diagnosed with this. According ot the interet, it's v. rare & could be the result of the baby's brain not growing correctly, causing the plates of her skull to fuse. Does anyone know more about this awful illness? Thx.

Have a look at this website. Headlines . There's not much information on there but they're a fantastic organisation and they give real and personal support to anyone affected by craniosynostosis. If your friend is not in touch with them already then I really would recommend that she contacts them.

HTH

My daughter was born with unicoronal synostosis. I found that the Headlines website had some useful factsheets (in the publications section) that are worth looking at. They cover the most common types and discuss treatment options.

Be aware that many other websites are American and treatment may differ there. Also remember that just like birthing stories you hear more about the horror stories than the uneventful births! There are more websites on the more complicated syndromes than the single suture synostosis. My daughter is now a very normal 4yo and no-one who meets her now notices anything different about her, I'd never have believed that myself before her surgery.

I hope it works out as well for your friend.

Thx for replies. Met my friend yesterday but decided not to tell her about the websites as they are quite "scary". A little knowledge can be a bad thing, especially if you are frantic with worry!