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1611319 tn?1378618399

Newborn with OAVS syndrome/Goldenhar

Does anyone have any experience with this syndrome.  It is like a minor Goldenhar issue.
~sass~
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Avatar universal
hi! my name is Juanita im a grandmother twin baby girls they were born 1 month premature and one of them has goldenhar syndrome she was born with extra skin by her mouth n ear.  docters will do surgery when shes 8 months old.is is it true baby will keep having surgerys as she get older?.
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1910322 tn?1322034478
i am trying but am a bit lost, found an amzing girl from the uk on facebook!
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535822 tn?1443976780
That is indeed good news , I hope you managed to connect up with the others who posted here .
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1910322 tn?1322034478
hi there, i am sooo happy to have finally found exactly what i was looking for! thank goodness there are others to share and ask advice from, we have a 15 month old princess who is yet to be fully diagnosed!
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535822 tn?1443976780
I am glad you have found some else to share and talk to ,I had a look on the internet but you are right there isn't much up there ..good Luck  
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1611319 tn?1378618399
Thanks for letting me know about your daughter.  OAVS is a very rare condition and is hard to find anyone to talk to about it.  How old is your daughter?  When will you know?
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Avatar universal
I have a daughter that they believe they will diagnose with OAVS.. it hasnt been confirmed, but they are going to take another blood draw, CT scans, advances hearing tests (she is still considered deaf in the right ear, and partially in the left), and spinal x-rays.

get a hold of me when you can! =)
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535822 tn?1443976780
okay I will look tomorrow
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1611319 tn?1378618399
oh yea, Goldenhar is the worst end of these disorders.  The OAVS is not as severe.
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1611319 tn?1378618399
i have tried several and feel like I am on a wild goose chase.  tells me to go to another address and then sends me right back to the same one!  ha....if you find one maybe you could send me the address in a private message..the address you sent me was blanked out on my end!
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535822 tn?1443976780
Gosh there are a lot of them up there ... put it into google I found lots .good luck, how is your child doing .
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535822 tn?1443976780
Found one its online   ***@****   thats the e-mail address the website is   http://www.goldenharsyndrome.org
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1611319 tn?1378618399
good idea!
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535822 tn?1443976780
you are welcome, I am wondering if you also put it into the search engine and add a support group wanted .
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1611319 tn?1378618399
It is a from of Goldenhar..OAVS stands for oculo-auriculo-vertebral spectrum .
I am hoping to find someone that has dealings with it for discussion.
Thanks for the link!  
sass
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535822 tn?1443976780
I think what you are meaning is a congenital birth condition associated with abnormalities of the head and the bones of the spinal column,it is fairly rare and can cause deafness ,here is a link    worldcf.org/.../craniofacial_resources/goldenhar_syndrome-
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535822 tn?1443976780
Is it called Goldenhar ?
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