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Summer 2000 Table of Contents
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Moebius Syndrome: A Life Without Smiles

Reprinted with permission from the Moebius Foundation 
http://www.ciaccess.com/moebius/front.htm  

Moebius Syndrome is a rare disorder characterized by lifetime facial paralysis. People with Moebius Syndrome can't smile or frown, and they often can't blink or move their eyes from side to side. In some instances, the syndrome is also associated with physical problems in other parts of the body.

The Moebius Syndrome Foundation is a nonprofit organization started by parents and people with Moebius Syndrome. We've come together to do what we can to fight back - by spreading the word among the medical and lay communities and by supporting research into the causes, treatments, and possible cures for Moebius Syndrome.

Moebius Syndrome is extremely rare. Two important nerves - the sixth and seventh cranial nerves - are not fully developed, causing eye muscle and facial paralysis. The movements of the face, blinking, lateral eye movements, and facial expressions are controlled by these nerves. Many of the other 12 cranial nerves may also be affected, including the 3rd, 5th, 8th, 9th, 11th and 12th.

What are the Symptoms?

The most apparent symptoms are related to facial expressions and function. In newborn infants, the first sign is an impaired ability to suck. Excessive drooling and crossed eyes may be present. In addition, there can be deformities of the tongue and jaw, and even of some limbs, including club foot and missing or webbed fingers. Most children have low muscle tone, particularly of the upper body.

Symptoms may include:

Although they crawl and walk later, most Moebius Syndrome children eventually catch up. Speech problems often respond to therapy, but may persist due to impaired mobility of the tongue and lips. As children get older, the lack of facial expression and an inability to smile become the dominant visible symptoms. Moebius Syndrome is sometimes accompanied by Pierre Robin Syndrome and Poland's Anomaly.

How does it occur?

Children are born with it. Although it appears to be genetic, its precise cause remains unknown and the medical literature presents conflicting theories. It affects boys and girls equally, and there appears to be, in some cases, an increased risk of transmitting the disorder from an affected parent to a child. Although no prenatal test for Moebius Syndrome is currently available, individuals may benefit from genetic counseling.

How is it Treated?

Infants sometimes require special bottles (i.e. Haberman Feeder) or feeding tubes to maintain sufficient nutrition. Strabismus (crossed eyes) is usually correctable with surgery. Children with Moebius Syndrome can also benefit from physical and speech therapy to improve their gross motor skills and coordination, and to gain better control over speaking and eating.

Limb and jaw deformities may often be improved through surgery. In addition, plastic reconstructive surgery of the face can offer benefits in individual cases. In some cases, nerve and muscle transfers to the corners of the mouth have been performed to provide an ability to smile.

How Can I Help?

One of the most frustrating aspects of coping with Moebius Syndrome is the surprising lack of awareness among physicians and nurses. It occurs so infrequently that many children go undiagnosed for months and sometimes years after birth. Parents and those affected spend a lot of time and emotional energy explaining and re-explaining this rare condition.

The rarity of Moebius Syndrome becomes, in effect, an additional complication of the disorder. Because so few members of the professional and lay public have even heard of Moebius Syndrome, medical and social support, as well as reimbursement from insurance companies are severely limited. This lack of support services puts additional burdens on individuals and their families in their attempts to cope with Moebius Syndrome. Lack of awareness also plays a role in limiting research into potential treatments and cures for Moebius Syndrome.

The Haberman Feeder

In some cases of severe feeding problems, such as those caused by Pierre Robin Syndrome or Moebius Syndrome, the Haberman Feeder offers an alternative to enlarged and/or extra holes in the nipple and nasogastric tubes.

Invented by the mother of a little girl with Pierre Robin Syndrome, the nipple rewards even the slightest effort from the baby's tongue or gums. If the baby cannot nurse at all, one can squeeze and release a limited volume of milk from the reservOír into the baby's mouth.

To order the Haberman Feeder call (800) 435-8316, or fax (815) 363-1246.

Description of the 12 Cranial Nerves

Moebius syndrome impacts the 6th and 7th cranial nerves - they are not fully developed, causing eye muscle and facial paralysis. The movements of the face, blinking, lateral eye movements, and facial expressions are controlled by these nerves. Many of the other 12 cranial nerves may also be affected, including the 3rd, 5th, 8th, 9th, 11th and 12th.

Resources

The Moebius Syndrome Foundation
P.O. Box 993
Larchmont, NY 10538
or call (914) 834-6008

Minnesota Moebius Syndrome Support Network
moebius1@worldnet.att.net 
http://home.att.net/~moebius1/index.htm 

Moebius Warriors International
Moebius1.org
PO BOX 169
Neshkoro, WI 54960
http://www.moebius1.org/ 

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Last Revision: September 4, 2003