My child is 1st one in NZ with.......please help me

Michelle - posted on 01/07/2012 ( 2 moms have responded )

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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 :(

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Briar - posted on 01/25/2012

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Hi Michelle,

I have just had a baby who is now 3 months an has been diagnosed with probable Goldenhar Syndrome. She has had to have a tracheostomy because of her cleft palette and small jaw. Both her ears are undeveloped although she has been tested and her inner ear seems to be working fine and she has a hearing aid until further operations.

I can sympthise with you and do understand how stressfull this is for a mother and watching our babies have to go through this. My journey has just started with my wee one.

If you would like to email me direct and keep in contact please feel free briar-marie@hotmail.com im in Auckland.

You seem to be doing everything you can for your little boy and hes very lucky to have you. What operations has he had to have or will be having in the future?

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