Trigonocephaly diagnosed in my 6 month old grandson

[Guest guest]

I know this isnt exactly the same thing but the picture of the little

girl in the intro is just what my grandson looks like...The diagnosis

was just confirmed last week and here I was worrying about the brain

surgery he was facing and now we learn they can't operate because the

suture of his skull running up from the nose to top of his head has

already completely fused..as a birth defect they say which again is not

quite the same as this group described but I can't find any groups and

I am feeling so anxious and not sure the medical world is really saying

or doing all they could for him..

Everything I read is pretty scary as to complications of this...his

brain growing in abnormal ways causing his head to be

mishapened..possible problems with his vision and hearing...

anything anyone knows firsthand would be greatly appreciated.