Moebius Syndrome

What is Moebius syndrome?

Moebius syndrome is a neurological disorder that’s present at birth (congenital). It happens when certain cranial nerves don’t develop as they should during pregnancy. It causes several medical conditions and issues, but the primary issues are weak or paralyzed facial muscles that affect facial expression and eye movement.

The condition is very rare. An estimated 2 to 20 in 1 million babies are born with this condition. Healthcare providers can’t cure Moebius syndrome. They can, however, do surgery to restore facial expression and repair eye issues and other physical differences that the syndrome causes. Most people with the syndrome have a typical lifespan.

What are Moebius syndrome symptoms?

Moebius syndrome causes many symptoms, but the most common and significant symptom is weakness in the facial muscles that control facial expression, eye movement, sucking and swallowing.

Babies born with this condition have issues feeding because they can’t nurse or take a bottle. They can’t smile, frown or raise their eyebrows. They can’t close their eyelids, even when they’re sleeping.

Other symptoms and conditions include:

• Cleft palate.
• Crossed eyes (strabismus).
• Defects in the hands and feet (clubfoot, webbed fingers, missing fingers or toes).
• Developmental delay.
• Hearing loss.
• Hypotonia.
• Inability to move their eyes from side to side.
• Micrognathia.
• Poland syndrome.

Some children with Moebius syndrome have autism spectrum disorder. As children grow older, they may have issues like crooked or missing teeth.

Complications of Moebius syndrome

People with Moebius syndrome may deal with social rejection because their appearance is different and because the condition may make it difficult for them to interact with others.

Our faces show our feelings. Facial expressions are one of the ways we communicate. Healthcare providers may refer to this process as facial and automatic mimicry. In facial mimicry, we unconsciously mirror or mimic the expressions we see on other people’s faces. (Ever automatically smile when someone smiles at you? That’s facial mimicry.)

Mirroring people’s facial expressions is how we demonstrate empathy and interact with them. Because people with Moebius syndrome can’t mirror facial expressions and cues, it can be hard for them to recognize and understand other people’s emotions. They may appear indifferent as if they don’t care about other people’s emotions.

Because the condition may affect speech and physical appearance, people with Moebius syndrome may be mistakenly perceived as having an intellectual disability. As a result, studies show, people with this condition may give up trying to connect with others. Loneliness and isolation — even when it’s by choice — may lead to depression and other mental health issues.

What causes Moebius syndrome?

Moebius syndrome happens when cranial nerves don’t develop as they should during fetal development. Cranial nerves send signals between your brain and different parts of your head, neck and torso.

The condition affects the sixth cranial nerve, which controls eye movement, and the seventh cranial nerve, which controls facial expression. It may affect the development of other cranial nerves, including the eighth nerve or auditory or vestibular nerve, which manages hearing, and the ninth nerve or glossopharyngeal nerve, which manages the ability to taste and swallow.

Experts don’t know the exact cause, but some potential causes are:

• Genetic mutations that affect cranial nerve development during gestation.
• Brainstem damage from lack of oxygen or reduced blood flow during pregnancy. Some research suggests exposure to certain medications or nonprescription drugs like cocaine may affect blood flow.

How is Moebius syndrome diagnosed?

Healthcare providers diagnose the condition by observing specific symptoms:

• Your child has facial weakness or paralysis that’s been present since birth but hasn’t gotten worse over time.
• They can’t move one eye or both eyes outward or side to side, but they can move them up and down.

Providers may do tests to rule out other conditions that could cause Moebius syndrome symptoms.

What are treatments for Moebius syndrome?

Treatment varies depending on your child’s situation. Common treatments include surgery, physical therapy and mental health support.

Surgeries

Surgeries to treat Moebius syndrome symptoms include:

• Cleft palate surgery: This surgery repairs the cleft, or opening, in your child’s palate (roof of their mouth).
• Facial reanimation surgery (“smile surgery”): This is microsurgery that moves muscle from other areas of your child’s body to their face, so your child can smile and make other facial expressions.
• Strabismus surgery: Surgeons loosen or tighten eye muscles so your child’s eyes are centered and can work together.

Other treatments

Babies and children with this condition may receive:

• Physical therapy: Babies and children benefit from therapy to develop gross motor skills that involve their large muscle groups. A physical therapist may focus on helping your child to walk and to build their strength.
• Speech therapy: Moebius syndrome affects babies’ ability to nurse or feed. It may affect older children’s ability to speak. Speech-language pathologists (speech therapists) focus on feeding issues in babies and speech and language issues with older children.
• Stretches and casts (Ponsetti method): This is a treatment for clubfoot.
• Occupational therapy: These specialists help children learn to manage daily activities and improve their fine motor, visual motor and sensory processing skills.
• Support for hearing loss: The condition may affect cranial nerves that manage hearing.
• Mental health support: Studies show people with Moebius syndrome may have depression, anxiety or issues with self-esteem.

How can I prevent Moebius syndrome?

There’s no way to prevent Moebius syndrome. Scientists are still working to understand what causes it and possible risk factors.

What can I expect if my child has Moebius syndrome?

If your child has this condition, you can expect that:

• They may benefit from surgery to correct physical issues, including facial reanimation surgery.
• They may need physical therapy, speech therapy and occupational therapy.
• If they have developmental delays, they may benefit from early intervention services.
• They may need mental health support.

Does Moebius syndrome affect people’s life expectancy?

No, it doesn’t. Most people with Moebius syndrome who receive treatment have normal lifespans.

How do I take care of my child and myself?

Moebius syndrome may affect your child in several ways. Understanding how the condition may affect your child may help you plan for the support they’ll need now and in the future. And while you’re planning, take time to think about what will help you. Caring for a child with this condition can be exhausting, frustrating and lonely. Take care of yourself by:

• Finding support: Ask your child’s provider about Moebius syndrome support groups. Spending time with people facing the same challenges may help you to feel less isolated.
• Sharing your feelings: You may have days (and nights) when you feel anxious, angry and afraid. You may feel depressed or sad. Consider talking to a therapist.
• Taking a break: Caring for a child with this condition can be exhausting. Friends and family may be able to help.

What questions should I ask my child’s doctor?

Moebius syndrome is rare. You may not even know the condition existed until now. Here are some questions you may want to ask your child’s healthcare provider:

• Which cranial nerves are affected?
• What specialists can help with the signs and symptoms?
• Should I consider surgery for my child?
• Should my family get genetic testing or counseling?