Janine, try searching on "Goldenhar" or Oculoauicular Dysplasia or OAV.  

The symptoms are: a partially formed or totally absent ear (microtia), 
the chin may be closer to the affected ear, one corner of the mouth may be
higher than the other, benign growths of the eye,a missing eye.

I wondered if there would be kidney disfunctions d/t ear involvement, but
I'm not seeing any associations.

Best wishes,
Sam Doak 
<<


Have any of you heard of Golden Hart Syndrome.?  I have a client who was
diagnosed at the age of 7 years with this very rare condition.  Her newborn
baby just delivered has also got all the symptoms,eg Deformity of one ear
(right), almost looks like half an earlobe with hearing loss apparently in
that ear. A palsy of the right side of the face, the right eye appears to be
infected and is oozing clear fluid. There does not appear to be any other
obvious physical symptoms.  Baby's weight was 3,500kgs at birth Mom has had
plastic surgery to her ear some years ago  but does not have any other
obvious signs.

I was called in to assist with the breastfeeding as everyone was convinced
this baby would not feed due to the palsy.  Contrary to everyones
expectations this baby is doing very well at the breast but needs assistance
when latching on the right side, although Mom is doing  well and very
committed to breastfeeding.

I have searched the internet & archives but have come up with very little
although I did read that there may be some heart involvement and also that
chromosome 16 may be the gene involvement.

Please help if any one knows this syndrome or has worked with a baby with
this.

Many thanks,

Janine Johnson
RN  RM IBCLC,
George
South Africa

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