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

Hemifacial Microsomia

What is Hemifacial Microsomia?
Hemifacial Microsomia is a condition in which the lower half of one side of the face is underdeveloped and does not grow normally. It is sometimes also referred to as first and second brachial arch syndrome, oral-mandibular-auricular syndrome, lateral facial dysplasia, or otomandibular dysostosis. The syndrome varies in severity, but always includes the maldevelopment of the ear and the mandible. This is the second most common facial birth defect after clefts.

Why did this happen?
Researchers are still not sure why this happens, however, most agree that something occurred in the early stages of development such as a disturbance of the blood supply to the first and second branchial arches in the first 6 to 8 weeks of pregnancy. Studies do NOT link this condition with the mother's activities or actions during her pregnancy.

Will this happen to children I have in the future?
For parents with one child with hemifacial microsomia, the chances are between 0 and 1%. Adults with this condition have a 3% chance of passing it to their children.

Will my child need surgery?
The surgeries recommended for children with hemifacial microsomia have a goal to improve facial symmetry, by reconstructing the bony and soft tissue, and establishing normal occlusion and joint junction. The timing for such surgeries vary among the surgeons and the severity of the problems. Common surgeries include:

• lowering the upper jaw to match the opposite side and lengthening the lower jaw. Sometimes a bone graft is used to lengthen the jaw and sometimes a distraction device is used.
• Ear reconstruction at about 5-6 years of age, involves 3 to 4 surgeries.
• Occasionally, it may be necessary to add bone to build up the cheekbone.
• Some children benefit from the addition of soft tissues to further balance the face.

What kinds of Problems could my child have?

• Your child may have skin tags in front of the ear or on different parts of the face.
• Hearing problems depend on the structures that are involved.
• Some children have some weakness in movement on the affected side of the face.
  

New advances in procedures to correct the symptoms of Hemifacial Microsomia 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 on the next page 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 Goldhar Syndrome, created this support and information network.

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.

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

The Craniofacial Center
Dr. Jeffery A. Fearon, MD, FACS, FAAP, Director
7777 Forest Lane, Suite C-700
Dallas, TX  75230
(972) 566-6464
Email:  cranio700@aol.com
Visit Dr. Jeffrey Fearon's informative website that is very lay friendly and easy to understand.

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 Hemifacial Microsomia.

Johns Hopkins Center for Craniofacial Development & Disorders
Web site: http://www.hopkinsmedicine.org/craniofacial
At the web site, click on the "Family" button, "Patient Care" button, and go to the section on Hemifacial Microsomia.

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.

Let's Face It
University of Michigan
Email: mailto:faceit@umich.edu
Website: www.dent.umich.edu/faceit
A website of information and support networks, educational resources and more! A good site for anyone with a facial difference.

Federation for Children with Special Needs
95 Berkeley Street, suite 104
Boston, MA 02116-3104
(617) 482-2915
e-mail: FCSNinfo@fcsn.org
web: www.fcsn.org

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 04:35 PM