Moebius Syndrome

Overview:
Moebius syndrome is a rare neurological disorder that is present at birth. It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, suck, grimace or blink their eyes) and unable to move their eyes laterally. Other cranial nerves may be affected, especially the 3rd, 4th, 5th, 9th, 10th and 12th. There may be skeletal involvement causing hand/feet anomalies and/or club feet. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders, and weak upper body strength may also be present. Approximately 30% of children with Moebius syndrome are on the autism spectrum.

Symptoms:
Lack of facial expression; inability to smile Feeding, swallowing and choking problems Keeping head back to swallow Eye sensitivity due to inability to squint Motor delays due to upper body weakness Absence of lateral eye movement Absence of blinking Strabismus (crossed eyes) Drooling High palate Short or deformed tongue Limited movement of tongue Submucous cleft palate Dental problems Hearing impairment Articulation / speech disorders Minor mid-line anomalies Club feet Hand/feet deformities

Testing/Diagnosis:
Clinical diagnosis. There is currently no genetic test for Moebius.

Treatment:
Infants sometimes require special bottles (i.e. Special Needs or Pigeon Feeder) or feeding tubes to maintain sufficient nutrition. Strabismus (crossed eyes) is usually correctible with surgery. Children with Moebius syndrome usually benefit from physical and speech therapy to improve their gross motor skills and coordination, and to gain better control over speaking and eating, as well as occupational and sensory integration therapies. 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 that surgery, nerve and muscle transfers to the corners of the mouth have been performed to provide an ability to smile.

Resources:
http://www.moebiussyndrome.com

http://www.manyfacesofmoebiussyndrome.com

Personal Story:



Contributed by MOM Jennifer Akers