The National Craniofacial Association
P. O. Box 11082	* Chattanooga, TN 37401
800-	332-2373

Goldenhar Syndrome

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 Oculoauicular 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. Currently, a scientific study is being conducted by the University of Texas Southwestern Medical Center at Dallas and The Association of Birth Defect Children, Inc. They are trying to locate all children with Goldenhar syndrome who were born since July 1, 1991 and who had a parent who served in the U.S. millitary in any capacity in 1990 or 1991. If you are interested in this study, please contact the Association of Birth Defect Children by email at abdc@birthdefects.org or call (407) 895-0802. Please indicate that you were referred by FACES.

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 thirty-two craniofacial teams located in 20 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
(800) 332-2373
email: faces@faces-cranio.org
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
Email: support@goldenharsyndrome.org
Web: http://www.goldenharsyndrome.org
Barb Miles, a parent of a child with Goldenhar Syndrome, created this support and information network.

Children's Craniofacial Association
P. O. Box 280297
Dallas, TX 75228
(800) 535-3643
Call and request a copy of Dr. Fearon's booklet on Hemifacial Microsomia/Goldenhar Syndrome.

Hemifacial Microsomia/Goldenhar Syndrome Family Support Network
c/o Kayci Rush
3619 Chicago Avenue
Minneapolis, MN 55407-2603
(612) 823-3529
This organization provides information packets for new parents and is an excellent resource.

MUMS
National Parent to Parent Organization
c/o Julie Gordon
150 Custer Court
Green Bay, WI 54301-1243
Toll free  (877) 336-5333
http://www.netnet.net/mums/
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 presented by facial differences of their children.

National Health Law Program
1101 14th Street, NW, Suite 405
Washington, DC 20005
(202) 289-7661
Website: http://www.healthlaw.org
Provides extensive information on health care law affecting families with children who have special health care needs.

Last modified on: Thursday, March 22, 2007 04:48 PM