Moebius Syndrome : Symptoms | Information | Treatment | Support
Author: Disabled World : Contact: www.disabled-world.com
Published: 2014-08-28 : (Rev. 2020-04-14)
Synopsis and Key Points:
Information regarding Moebius syndrome, a neurological condition that mainly affects muscles that control facial expressions and eye movement.
A number of people who experience Moebius syndrome are born with a small chin, a small mouth, and with a short or unusually shaped tongue.
Children who are affected often experience delays in development of their motor skills such as crawling or walking, although most eventually achieve these skills.
Moebius syndrome is a rare form of neurological condition that mainly affects a person's muscles that control their facial expressions and eye movement.
The signs and symptoms of the condition are present at the time of a person's birth. Weakness or paralysis of an affected person's facial muscles is one of the most common features of Moebius syndrome. People with this syndrome lack facial expressions; they are unable to smile or frown, or to raise their eyebrows. Muscle weakness associated with the syndrome also causes issues with feeding that become apparent during a person's infancy.
A number of people who experience Moebius syndrome are born with a small chin, a small mouth, and with a short or unusually shaped tongue. They may experience cleft palate, or the roof of their mouth may be high or arched. The features contribute to speech issues, which happen in many children with Moebius syndrome. Dental issues, to include missing or misaligned teeth, are also common.
Moebius syndrome also affects the muscles that control back-and-forth eye movement. People with the syndrome have to move their head from side to side to read or to follow the movement of items. People with this syndrome have difficulties with making eye contact and their eyes might not look in the same direction. In addition, their eyelids may not close completely when they blink or sleep, something that can result in irritated or dry eyes.
Additional features of Moebius syndrome may include weak muscle tone, issues with the person's feet or hands, as well as hearing loss. Children who are affected many times experience delays in development of their motor skills such as crawling or walking, although most eventually achieve these skills.
Some studies have suggested that children with Moebius syndrome are more likely than children without to experience characteristics of autism spectrum disorders; recent studies question this association. The fact that people with Moebius syndrome have difficulties with speech and eye contact due to their physical differences means autism spectrum disorders may be hard to diagnose in them. Moebius syndrome might also be associated with a slightly increased risk of intellectual disability; however, the majority of those affected experience average intelligence. Researchers estimate the syndrome affects 1 in 50,000 to 1 in 500,000 newborns.
A Child with Moebius syndrome May Also Experience:
- Teeth problems
- Speech problems
- Sensitivity to bright light
- Sensitivity to loud sounds
- Limited movement of the tongue
- Respiratory illnesses due to low muscle tone
- Hearing problems caused by fluid in the ears
- Delayed crawling and/or walking due to low muscle tone
Causes of Moebius Syndrome
The causes of Moebius syndrome remain unknown, although the condition most likely results from a combination of environmental and genetic factors. Researchers have not identified any specific genes related to the syndrome. The disorder; however, seems to be associated with changes in particular regions of chromosomes 3,10, or 13 in some families. Certain medications taken during pregnancy, as well as abuse of drugs such as cocaine, might also be risk factors for Moebius syndrome.
A number of the signs and symptoms of Moebius syndrome result from the absence or underdevelopment of a person's cranial nerves. The nerves, which emerge from the person's brainstem at the back of their brain, control back-and-forth eye movement and facial expressions. The disorder may also affect other cranial nerves that are important for chewing, speech and swallowing. An issue with development of cranial nerves leads to facial muscle weakness or paralysis, something that is characteristic of Moebius syndrome.
Researchers speculate that Moebius syndrome might result from changes in blood flow to the person's brainstem during early stages of embryonic development. It is unclear; however, what causes these changes to happen and why they specifically disrupt the development of cranial nerves. The causes of some other signs and symptoms of the syndrome is largely unknown, to include foot and hand issues.
Most instances of Moebius syndrome are sporadic, meaning they happen in people with no history of the syndrome in their family. A small percentage of those affected have been reported to run in families. The condition; however, does not have a single and clear pattern of inheritance.
Other Names Used for Moebius syndrome:
- Mabius sequence
- Moebius sequence
- Moebius spectrum
- Congenital facial diplegia
- Moebius congenital oculofacial paralysis
- Congenital ophthalmoplegia and facial paresis
Treating Moebius Syndrome
At this time, there is no cure for Moebius syndrome.
A person's doctor will design a treatment plan with the goals of managing and minimizing their symptoms to the best extent they can. In some instances, a plastic surgeon might choose to create what is referred to as a, 'static sling,' or a piece of the child's own tissue that is transplanted in order to prop up the drooping skin around their lips or eyelids.
Another procedure that may be performed is referred to as a, 'smile surgery,' or, 'smile operation.'
The procedure is also known as a, 'functional muscle transfer,' and takes muscle from elsewhere in the child's body, most often their thigh, and grafts it onto the corners of the child's mouth giving them the ability to smile. While the surgery does restore a child's smile, it does not cure Moebius syndrome; it also does not restore any other facial expressions. It is important for parents to understand that the procedure is very time-intensive and involved; it can take up to 12 hours for one side of the child's face.
Nutritional and Feeding Support
Almost every infant with Moebius syndrome is unable to nurse properly because they cannot form the right, 'suck,' expression. They require alternatives to traditional breastfeeding which might include the following:
- Nipple shields
- Feeding tubes
- Special bottles
Treating Vision Issues in Moebius Syndrome
The fact that many children with Moebius syndrome are unable to blink appropriately finds that at risk for developing dry eye. Regular use of eye drops is usually effective in managing this particular complication.
If eye drops are not enough, a doctor may recommend a procedure called, 'tarsorrhaphy,' which partially closes the child's eyelids.
For children with this syndrome who have crossed eyes, a number of corrective treatments exist. The treatments range from eye patches to surgery and have an outstanding rate of success.
Treatment of Dental/Orthodontic Issues in Moebius Syndrome
Due to the fact that some children with Moebius syndrome are born with a high palate, they are more susceptible to fragile, crowded, or misaligned teeth.
They might also have difficulties with closing their mouths, something that leads to chronically dry lips and gums.
Orthodontic devices may move their front teeth into a more average position and improve the child's bite and ability to close their mouth.
In more severe instances, a child might benefit from jaw surgery.
Speech-Language Therapy and Moebius Syndrome
Facial expressions are crucial to a child's relationships with the world around them.
Whether they are at home, school, or in other social settings - their interactions with others depend on their ability to convey their feelings and respond to others.
Due to this, Moebius syndrome carries with it a certain set of challenges. The good news is that a child with this syndrome can learn new ways of communicating how they feel. They can use their body language, physical posture and tone of voice to compensate.
Speech-language pathologists will work with the child to develop and refine these means of communication, as well as helping them to improve and control their breathing and swallowing.
Counseling and Psychosocial Support
Children with Moebius syndrome may feel discouraged, 'left out,' or different.
The fact that they are unable to communicate fully through facial expressions may find others thinking they are unfriendly, antisocial, or simply unobservant.
Counselors, child psychologists, social workers and other mental health professionals can be a source of vital support for the child as they learn to live with and not be defined by this syndrome. These experts work with the child to build up their self-esteem, teach them skills for coping with feelings of frustration, anger and sadness while helping them to find constructive ways of talking about their disability with classmates, teachers and others in society.
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