Moebius syndrome

Facial expressions are an essential part of human communication, and they’re especially important for infants and younger children who are still mastering the ability to speak. A child uses his face to convey that he’s happy, sad, fearful, tired or in pain — all invaluable cues for his parents, and vital to his interactions with the world around him. (Also, the act of smiling by itself can improve a child’s mood and make him happier!)

If your child has Moebius syndrome, he is unable to use this method of communication: Two of his cranial nerves (the set of nerves, extending out of the brain, responsible for certain movements and sensory functions) are either missing or not fully formed. As a result, his facial muscles are paralyzed.

Moebius syndrome:

• is a very rare type of facial nerve palsy
• is always present at birth (congenital)
• usually shows up in newborns as a combination of difficulty nursing, crossed eyes and excessive drooling
• may be caused by disrupted blood flow in the brain in utero
• is sometimes associated with intellectual disabilities and developmental delays (but also affects children of normal intelligence and cognitive development)
• can occur alongside other physical problems, including respiratory illnesses, mouth, tongue and jaw deformities and limb deformities like clubfoot

Although this information may seem overwhelming, there is hope. There is no cure for Moebius syndrome, but Children’s Hospital Boston offers a number of options for successfully managing the symptoms and potential complications of the disease. Our compassionate pediatric health experts are here to help meet your child’s physical, educational and emotional needs — and we will include and support your family at every step of the way.

How Children’s Hospital Boston approaches Moebius syndrome

Children’s has a long and distinguished history of caring for children with craniofacial anomalies and nerve disorders. Clinicians in our Department of Plastic and Oral Surgery are regarded as international leaders in understanding and treating complex conditions like Moebius syndrome that affect:

• facial appearance and function
• nursing/feeding
• chewing and swallowing
• speech and language

In particular, Children’s has a dedicated Facial Reanimation Program that treats all aspects of facial nerve paralysis and paresis (partial paralysis). Our multidisciplinary team approach involves:

• plastic surgeons, doctors trained to perform procedures that repair deformities or reconstruct parts of the face or body
• oral and maxillofacial surgeons, experts who surgically repair defects or disorders of the mouth, jaw, gums and teeth
• pediatric dentists, health professionals trained to diagnose and treat teeth and gum problems in children and adolescents
• pediatric orthodontists, experts in correcting irregularities in children’s teeth, jaws and “bite”
• nursing professionals with particular expertise in caring for children with facial nerve disorders and deformities
• speech-language pathologists, health professionals who help children and adolescents compensate for and overcome speech, language, feeding and swallowing impairments
• child and adolescent psychologists and social workers, who provide counseling and offer emotional and psychosocial support to children and their families
• when necessary, neurologists and developmental pediatricians who treat related intellectual and learning disabilities

Our caring professionals understand that a lack of facial expression can cause a variety of functional and social problems for your child. That's why we make it our mission to offer the most advanced and effective means of managing symptoms — so that your child can live an active, fulfilled and happy life.

Moebius syndrome: Reviewed by Amir Taghinia, MD
© Children’s Hospital Boston; posted in 2011