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Craniofacial Conditions

 

Möebius Syndrome

What is Möebius Syndrome?

Möebius syndrome begins early in the development of the nervous system. Children are often unable to move the muscles of the face because of damage to nerves that control those muscles. Several nerves may be affected, and a variety of problems may occur. Children with Möebius syndrome usually have swallowing problems, crossed eyes, and full or partial paralysis of their facial muscles. Sometimes there are other problems, such as a cleft palate, hearing loss, and abnormalities of the chest and limbs.

Why was my child born with Möbius syndrome?

Some doctors believe the problem arises when certain nerves in the head and neck do not develop properly; others believe that the nerves begin to develop but are damaged before birth. Still others believe that this rare disorder is related to the development of blood vessels.

What problems is my child likely to have?

Children with Möebius syndrome may have trouble breathing, eating, and staying healthy during their first few months, or even years, of life. They are unable to move the muscles of facial expression. Some have difficulty swallowing and may choke while feeding.

Children with Möebius syndrome have a weakness or paralysis of their facial muscles; it may be unilateral (one side) or bilateral (both sides). Depending on which branches of the facial nerves are damaged, they may be unable to smile, close their eyes, pucker their lips, or wrinkle their forehead. This can prevent them from using facial expressions to show what they are feeling. As a result, people who are unfamiliar with your child may misinterpret what your child is thinking or feeling.

Many children with Möebius syndrome are unable to turn their eyes to look sideways, giving them a fixed, staring appearance. This is caused by paralysis of the lateral eye muscles. Strabismus, or crossed eyes, is also common.

About a quarter of children with Möebius syndrome have some type of limb deformity from relatively minor problems, such as a club foot or syndactyly (fused fingers or toes), to missing fingers or toes.

Can these lead to other problems as my child develops?

Yes. Because many of the nerves and muscles involved in swallowing are also used for talking, children with Möebius syndrome are prone to develop speech problems as they get older. Children with the syndrome may have one-sided paralysis of the tongue.

Another concern as your child gets older is dental problems. Because of facial nerve paralysis and difficulty eating, food may collect around the gums and teeth. To prevent tooth decay, it is very important to keep your child's teeth and gums clean by brushing and flossing. Many children require orthodontic braces later in life.

Can Möebius syndrome be cured?

The damage to the sixth and seventh nerves is considered permanent, so Möebius syndrome cannot be cured, in the sense that all its symptoms can be eliminated. But many of the problems associated with the syndrome can be alleviated by surgical procedures. Since each child is different, treatment plans vary according to the individual's needs.

How are problems associated with Möebius syndrome corrected?

Because the problems associated with Möebius syndrome are so diverse, a multidisciplinary team of specialists offers the best approach to your child's medical care. Working in concert, they can develop a treatment plan specifically for your child.

Children with paralysis of the facial muscles can often be helped by an operation called free muscle transplantation, usually performed by a plastic surgeon. In this procedure, a muscle from another part of the body is transferred to the affected area of the face. Then the nerve to the muscle is attached to the nerve for chewing. If the paralysis is on both sides, a nerve graft can be connected across the face to the transferred muscle. This often improves facial appearance and permits some movement of muscles in the lower portion of the face.

Members of your multidisciplinary care team can determine the best way to treat any difficulties with breathing, speech, and hearing.

Will Möebius syndrome affect my child's intellectual development?

The majority of children with Möebius syndrome have normal intelligence. However, about 10 to 15 percent of people with the syndrome have minor mental retardation. Because the condition is so rare and the cause is unclear, it is not known whether retardation results from Möebius syndrome or from other causes. In general, though, low intelligence is not associated with Möebius syndrome.

How will Möebius syndrome affect my child's social and educational development?

Most children with Möebius syndrome have normal intellectual development. But because of facial paralysis, speech problems, and unusual eye movements, other people may misinterpret their expressions of emotion or mistakenly view them as mentally retarded. It is important to meet early on with teachers and school officials to ensure that your child's special needs are met

Recommended Reading

  • "Möebius Syndrome,"
  • Cleft Palate Foundation,
  • 104 South Estes Drive, Suite 204, Chapel Hill, NC 27514

Related Links

Moebius Syndrome Foundation
  • www.moebiussyndrome.com

  • Many Faces of Moebius Syndrome
  • www.manyfacesofmoebiussyndrome.com

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