Goldenhar Syndrome
&
Hemifacial Microsomia
Charlotte with her replica wax ear of the one she will end up with
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Ellie pictured here with her mum & dad being tube fed.
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Charlotte's Story
Ellie's Story
Charlotte's new ear pictures
Questions and Answers
Link to contact a family
Link to national deaf childrens society
Link to changing faces.co.uk
Unilateral hearing loss
Goldenhar Syndrome was named in 1952, when Dr Goldenhar wrote about a number of facial problems that tend to occur together. Goldenhar is quite variable with some common abnormalities.
* Small, missing or misshapen ears.
* Skin Tags.
* Mouth opening larger on one side.
* Underdevelopment of the muscle of the face.
* Spinal vertebrae fused, missing or not formed on one side.
* Ribs misshapen on one side.
* Eyes - dermoid cyst over the eye.
* Middle ear abnormalities - nearly all the children have a hearing loss on the abnormal side.
* Cleft lip and or palate.
* Breathing difficulties - some of the children with Goldenhar have required a tracheostomy soon after birth.
* Feeding problems - some of the children have had difficulty swallowing and required tube feeding.
* Internal problems such as kidney or heart (heart are less common but, occasionally, are found with this syndrome.
I have recently heard of another syndrome called Fragile X, this one is new to me and probably to you to, so if you are interested in finding out more,
Click on this link>
Picture Gallery
Kane's Story
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