Goldenhar Syndrome (it's named after the doctor who described it and has nothing to do with golden hair) is also known by a variety of other names: Oculo Auriculo Vertebral Spectrum, OAV Spectrum, Facio-Auriculo-Vertebral Spectrum, FAV, Goldenhar-Gorlin Syndrome, First and Second Bronchial Arch Syndrome, Oculo-Auriculo-Vertebral Dysplasia, and Hemi-Facial Microsomia (HFM).
Goldenhar Syndrome is defined by a wide spectrum of related abnormalities. Each child will have a unique collection of these abnormalities, in varying degrees of severity. Most of these abnormalities are associated with facial bones and the spine, and are characterized by one side of the body being more affected than the other. Typically the face is lop-sided, an ear may be malformed or missing, and the jaw and other facial structures may be affected. These abnormalities are typically treated with surgery, although doctors disagree on which is the best surgery and what is the best time to do the surgery.
Other associated problems can include visual or auditory problems, perhaps even blindness and/or deafness, due to the structural defects. Hearing aids or habilitation training may be needed for the child with Goldenhar Syndrome. The child's intellect is usually not affected, nor is his or her life span expected to be shortened.
The Goldenhar Fund
A gathering place for families and physicians. Also features some
highly technical articles.
Goldenhar
Syndrome
Contact information and extensive links.
Goldenhar Syndrome/Boy
on Barney
If you want to see a child with Goldenhar Syndrome, tune into Barney!
Goldenhar Syndrome
Support Network
Entry point to choose your preferred viewing language.
Hemifacial
Microsomia and Goldenhar Syndrome
Links for more information.
Oculoauriculovertebral
Dysplasia
Highly technical and very informative text on Goldenhar Syndrome.
The Story
of Sara
A doting mother writes an autobiography for her daughther, now
three years old.
For more information on congenital conditions:
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