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
anything anyone knows firsthand would be greatly appreciated.
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