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 or OAV.
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.
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.
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
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
New advances in procedures to correct the symptoms of Goldenhar Syndrome are constantly being developed. Be an advocate for your child!
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 64 craniofacial teams located in 27 states, the District of Columbia, and Canada. This is by no means a comprehensive list of all the craniofacial teams. Please contact FACES for details.
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. The listing below will get you started.
FACES: The National Craniofacial Association
P. O. Box 11082
Chattanooga, TN 37401
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. Resources include newsletters, information about craniofacial conditions, and networking opportunities.
Goldenhar Syndrome Support Network
9325 163rd Street
Edmonton, Alberta, Canada T5P 2P4
Support Groups: health.groups.yahoo.com/group/goldenharsyndrome/ and health.groups.yahoo.com/group/goldenharadults/Barb Miles, a parent of a child with Goldhar Syndrome, created this support and information network.
National Parent to Parent Organization
c/o Julie Gordon
150 Custer Court
Green Bay, WI 54301-1243
Toll free (877) 336-5333
This organization helps you get in touch with parents in your area whose children also have Goldenhar syndrome.
Children with Facial Difference:
A Parent's Guide
Written by Hope Charkins, MSW. Order from Amazon.com if you cannot find it in your local bookstore. Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges present by facial differences of their children.
National Health Law Program
1444 I Street NW, Suite 1105
Washington, DC 20005
Provides extensive information on health care law affecting families with children who have special health care needs.