New advances and procedures concerning Hemifacial Microsomia are constantly being developed. Be an advocate for your child!
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
How do I get help for my child?
Your child should be treated by a qualified craniofacial medical team at a craniofacial medical 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.
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.
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.
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
What is Hemofacial Microsomia?
This very informative article written by Drs. Pravin K. Patel and Bruce S. Bauer of Children's Memorial Hospital in Chicago provides information, photos and drawings of surgical options and procedures. To read it, click HERE.
American Speech-Language-Hearing Association
The ASHA Action Center welcomes questions and requests for information from members and non-members.
Federation for Children with Special Needs
529 Main Street, Suite 1102Boston, MA 02129
Phone: (617) 236-7210 or (800) 331-0688
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
Children with Facial Difference:
A Parent's Guide
Written by Hope Charkins, MSW. Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children. Order from Amazon.com if you cannot find it in your local bookstore.