New advances and procedures concerning Nager Syndrome are constantly being developed. Be an advocate for your child!
What is Nager Syndrome?
Nager Syndrome is a condition resulting from problems in the development of the first and second branchial arches. The first arches produce the nerves and muscles for chewing, the lower jaw, two of three bones in the middle ear, and a small part of the ears. The second arches produce the nerves and muscles of facial expression, one bone in the middle ear, most of the external ears, and parts of the bone above the larynx.
Characteristics which may or may not be present in your child include:
Underdevelopment of the cheek and jaw area
Down-sloping of the opening of the eyes
Lack or absence of the lower eyelashes
Lack of development of the internal and external ear
Possible cleft palate
Underdevelopment or absence of the thumb
Shortened forearms and poor movement in the elbow
Why did this happen?
Because this is such a rare syndrome, it is difficult to conduct genetic research; however, some initial studies indicate that Nager Syndrome may be passed on from one parent via a dominant gene.
Will this happen to children I have in the future?
If it is true that the gene is dominant and is passed on from a parent, then the chances would increase of having another child with Nager Syndrome. Genetic testing is highly recommended.
What kinds of problems could my child have?
Possible limited range of arm motion
Stomach and kidney reflux
Temporary or long-term hearing loss -- hearing evaluations should be conducted at an early age
Nager Syndrome does not affect intellect
Will my child need surgery?
Several surgeries may be necessary depending on the severity of your child's Nager Syndrome. Some which may be needed are:
Tracheostomy to help with breathing
Gastrostomy tube to assure proper nutrition
Craniofacial surgery to the jaw and ears
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.
US National Library of Medicine
Your guide to understanding genetic conditions
The Foundation for Nager and Miller Syndromes
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
Worldwide Nager Syndrome Map
A map showing where people with Nager Syndrome live. If you would like to add yourself, please do!
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.