What is Goldenhar Syndrome?

Goldenhar Syndrome is a congenital birth defect which involves deformities of the face. It usually affects one side of the face only. Characteristics include:

• 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

Goldenhar is also known as Oculoauricular Dysplasia, Craniofacial Microsomia, or OAV.

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Why did this happen?
Doctors are uncertain why Goldenhar occurs. However, they do not believe it is the result of anything the mother did while she was pregnant. Environmental factors may play a part and there does seem to be an increased incidence of Goldenhar among the children of Gulf War Veterans.

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Will this happen to children I have in the future?
The chances of having another child with Goldenhar is less than 1% or less. Your child has about a 3% chance of passing it on to his or her children.

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What kinds of problems could my child have?

In addition to the physical characteristics common to Goldenhar, your child may have the following problems:

• Hearing problems

• Weakness in moving the side of the face that is smaller

• Dental problems - the soft palate may move to the unaffected side of the face

• The tongue may be smaller on the affected side of the face

• Fusion of the bones of the neck

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Will my child need surgery?

Depending on the severity of Goldenhar Syndrome, your child may have some or all of the following surgeries:

• Lowering of the jaw on the affected side

• Lengthening of the lower jaw

• 3 to 4 operations to rebuild the outer ear

• Addition of bone to build up the cheeks

• Soft tissue may need to be added to the face

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How do I get help for my child?

Your child should be treated by a qualified craniofacial medical team at a craniofacial center. Currently, FACES has information on many of these teams. This is by no means a comprehensive list of all the craniofacial teams.
Please Contact Us for details.

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Am I alone?
No! There are many families and organizations who will be glad to talk with you and help you with information and support. Don't forget books, videos, and websites. (Facebook has dozens of private groups specific to conditions. Try searching Facebook with a few different key words such as "craniofacial" or "burn" and find groups of parents and others with similar differences.) The information below will help you get started.

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FACES: The National Craniofacial Association

We provide financial support for non-medical expenses to patients traveling to a craniofacial center for treatment. Eligibility is based on financial and medical need (Apply Here). Resources include newsletters, information about craniofacial conditions, and networking opportunities. Contact Us for more information.

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Office of Rare Diseases

The Genetic and Rare Diseases Information Center

Excellent web site for finding information on a variety of craniofacial disorders, particularly very rare ones. Information specialists are available to answer your questions. Telephone operation is Monday - Friday, 12 pm to 6 pm Eastern Time. Email or fax requests for information will be answered within 5-10 working days. U.S. Mail requests will be answered within 5-10 working days. NOTE: The center does not give medical advice, provide treatment, or diagnose illness.
Phone: (888) 205-2311
Website: https://rarediseases.info.nih.gov/diseases/6540/goldenhar-syndrome

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US National Library of Medicine

Your guide to understanding genetic conditions

Website: https://ghr.nlm.nih.gov/condition/craniofacial-microsomia

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Goldenhar Syndrome Support Network
Phone: ‪(888) 486-1209‬ or (702) 769-9624
Website: http://www.goldenharsyndrome.org/

Support Groups:

health.groups.yahoo.com/group/goldenharsyndrome/

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American Speech-Language-Hearing Association

The ASHA Action Center welcomes questions and requests for information from members and non-members.

Phone: 800-638-8255

Website: https://www.asha.org/

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National Health Law Program

Provides extensive information on health care law affecting families with children who have special health care needs.

Phone: (202) 289-7661
Website: https://healthlaw.org/

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Worldwide Goldenhar Syndrome Map

A map showing where people with Goldenhar Syndrome live. If you would like to add yourself, please do!
https://www.diseasemaps.org/goldenhar-syndrome/

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More Resources

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