MoeBius Syndrome

What is Moebius Syndrome? Moebius syndrome is a rare neurological disorder characterized by weakness or paralysis (palsy) of multiple cranial nerves, most often the 6th (abducens) and 7th (facial) nerves. Other cranial nerves are sometimes affected. The disorder is present at birth (congenital). If the 7th nerve is involved, the individual with Moebius syndrome is unable to smile, frown, pucker the lips, raise the eyebrows, or close the eyelids. If the 6th nerve is affected, the eye cannot turn outward past the midline. Other abnormalities include underdevelopment of the pectoral muscles and defects of the limbs. Moebius syndrome is not progressive. The exact cause is unknown. It appears to occur randomly (sporadically) in most cases; however, some cases occur in families suggesting that there may be a genetic component.

Signs and Symptoms Some children with Moebius syndrome have a short, malformed tongue and/or an abnormally small jaw (micrognathia). Cleft palate may also be present. These abnormalities contribute to feeding and breathing difficulties. Children with cleft palate are prone to ear infections (otitis media). There may be external ear anomalies including underdevelopment of the outer portion of the ear (microtia) or total absence of the outer portion of the ear (anotia). If the 8th cranial nerve is affected, there is likely hearing loss.  Dental abnormalities are not uncommon. There is an increased risk for childhood cavities. Some affected children have difficulties with speech and delays in speech development.

Signs and Symptoms Con't Skeletal malformations of the limbs occur in over half of children with Moebius syndrome.  Lower limb malformations include clubbed feet and underdevelopment of the lower legs; upper extremities may have webbing of the fingers, underdevelopment or absence of the fingers, and/or underdevelopment of the hand.  Some affected children exhibit delay in attaining certain milestones such as crawling or walking, most likely due to upper body weakness; however, most children eventually catch-up.   Moebius syndrome rarely is associated with minor intellectual disability. Some children have been classified as being on the “autistic spectrum”.  The lack of facial expressions and the inability to smile can cause observers to misinterpret what an affected individual is thinking or feeling or intends.

Affected Populations Moebius syndrome affects males and females in equal numbers. The disorder is present at birth (congenital). The exact incidence and prevalence rates of Moebius syndrome are unknown. One estimate places the incidence at 1 case per 50,000 live births in the United States.

A Personal Experience Maggie Matthew

Moebius Syndrome in Frame

What can you do? Advocate! Be aware, watch for signs of choking when eating Encourage and help facilitate interactions with peers Take time to listen