Cranio Synostoses

[BonnieV]

Does anyone have any experience with this condition? We are in the process of having our baby evaluated for this. It seems as though his fontenelle (sp?) has closed prematurely in the front and there is a ridge forming from the bridge of his nose to the soft spot.

I'd appreciate any help I can find.

Thanks,
Bonnie & Stephen 3.26.03

[lizajane]

we just had our son evaluated for something similar. the ped thought his skull had fused because his head is narrow, not round. (it looks fine to me and everyone else i know...) it turns out, he does not have the condition that they dr was concerned about. but it was tough sitting in the waiting room of the radiologist while my 6 month old had his skull x-rayed in the other room. they do have to continue to watch him for this problem, so we are still a little bit worried.

i don't think i answered any questions or helped you. but i wanted to say that i am sorry you have to worry and that it was hard for me when i had to worry. so we will be thinking about you and stephen. (who is 3 days younger than schuyler!)

[COElizabeth]

My cousin's baby had this and required surgery to re-open the skull so the brain could grow normally. It sounds horrible, but the doctor assured my cousin it was bone surgery, not brain surgery, and not as scary as it sounds. The surgery went well, and the baby is now a healthy and happy toddler. He had a scary-looking scar, but it's long since been covered by his hair. I hope your little one doesn't have to go through it, but if he does, I hope everything goes as smoothly!

Elizabeth, Mom to James, 9-20-02

[nitaghei]

I don't have any sources, but wanted to tell you that DH had this surgery over 35 years ago, when it was experimental. You can't even tell that he had surgery, and there are no developmental effects (DH has a Ph.D. :) FWIW). It is routine surgery now, evidently, according to a ped neurosurgeon we saw when DS had a (different) potential problem. It is skull surgery, and doesn't touch the brain. And it isn't genetic (that's my understanding, at least).

Nita