Michelle - posted on 01/07/2012 ( 2 moms have responded )
my son is 1st baby in NZ with Goldenhar syndrome,
u can stick ur finger in ur ear because u have a hole,
My son Doesnt its completely covered by skin and a CT scan showed it was all bone behind the skin covering his hole to his ear.
He also has NO middle ear and is there for permanently Half deaf.
He cannot talk due to needing a jaw reconstruction which cant be done until he is 17 yrs of age.
he is only 2yrs now and i'm doing nyt course to try and teach him NZ sign language.
i'm stressed out and need someone to talk to :(