New advances and procedures concerning Miller Syndrome are constantly being developed. Be an advocate for your child!
What is Miller Syndrome?
Miller Syndrome is a very rare genetic condition often referred to as "postaxial acrofacial dysostosis." This disorder is characterized by distinctive craniofacial malformations that occur in association with limb abnormalities. Some facial characteristics include:
Abnormally small jaw (micrognathia)
Small, protruding "cup-shaped" ears
Drooping of the lower eyelids
Why did this happen?
Research is still being conducted; however, it is believed that Miller Syndrome is inherited as an autosomal recessive genetic trait. That means that it is passed on when both parents carry a recessive gene with the Miller Syndrome trait.
Will this happen to children I have in the future?
If both parents carry the gene, there is a good chance that other children would be born with Miller Syndrome.
What kinds of problems could my child have?
In addition to the craniofacial characteristics common to Miller Syndrome, your child may have the following problems:
Incomplete limb development
Webbing of fingers or toes
Absence of certain fingers and /or toes
Underdevelopment of the ulna (bones on the "pinkie" side) and the radius (bones on the thumb side) causing the forearms to appear unusually short
Miller Syndrome does NOT affect intelligence
Will my child need surgery?
Several surgeries may be necessary depending on the severity of your child's Miller Syndrome. Some which may be needed are:
Tracheostomy to help with breathing
Gastrostomy tube to assure proper nutrition
Craniofacial surgery to the jaw, ears, and eyes
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.
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 information below will help you get started. (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.)
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
US National Library of Medicine
Your guide to understanding genetic conditions
The Foundation for Nager and Miller Syndrome
Excellent resource!! This is an international support group that serves as an information clearinghouse that links families together. They have an extensive library of resources and medical reports and are involved in a genetic research project working to locate the genes responsible for Miller Syndrome. Twice a year, they publish a very informative newsletter.
Phone: (800) 507-FNMS (3667)
International Phone: 001-253-333-1483
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
** According to FNMS, Miller Syndrome shares facial characteristics with the following syndromes:
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.