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Moebius syndrome

  • Here at Boston Children's Hospital, we specialize in innovative, compassionate care that always recognizes your child as an individual – never “just a patient.”

    From your first visit, you'll work with a team of professionals who are committed to supporting all of your child's (and your family's) medical, educational and emotional needs.

    What are the treatment options for the facial nerve palsy in Moebius syndrome?
    There is no cure for Moebius syndrome, so your child's doctor will design a treatment plan aimed at managing and minimizing his symptoms to the greatest extent possible.

    Static slings

    In some cases, a plastic surgeon may elect to create what is called a static sling – a piece of the child's own tissue that is transplanted in order to prop up the drooping skin around the lips (the “smile area”) or eyelids.

    “Smile surgery”

    You may have read or heard about a procedure called “smile surgery” or “the smile operation,” also known as functional muscle transfer. This is an operation that takes muscle from elsewhere in the child's body (usually the thigh) and grafts it onto the corners of his mouth, giving him the ability to smile.

    While this surgery does restore a child's smile, it does not cure his Moebius syndrome because it can't restore any of his other facial expressions. It's also important to note that the procedure is very time-intensive and involved, taking up to twelve hours for just one side of the face. Ask your treating clinician if smile surgery is an advisable option for your child.

    Feeding and nutritional support

    Nearly all infants with Moebius syndrome are unable to nurse properly because they can't form the right “suck” expression. These babies require alternatives to traditional breastfeeding, which may include:

    • special bottles
    • nipple shields
    • feeding tubes
    • syringe-feeding
    • spoon-feeding
    • dropper-feeding

    Treating vision problems

    Since many children with Moebius syndrome cannot blink properly, they are at risk for developing dry eye. Regular use of eye drops is usually effective in managing this complication. If eye drops aren't enough, doctors may recommend a procedure called tarsorrhaphy that partially closes the eyelids.

    For children born with crossed eyes, there are a number of corrective treatments – ranging from eye patches to surgery – that have an outstanding success rate.

    Treating dental/orthodontic problems

    Since some children with Moebius syndrome are born with a high palate (roof of the mouth), they are more susceptible to crowded, fragile or misaligned front teeth. They may also have a harder time closing their mouths, leading to chronically dry lips and gums.

    Orthodontic devices can move the front teeth into a more normal position, improving the child's bite and ability to close the mouth properly. In more severe cases, a child may benefit from orthognathic (jaw) surgery.

    Speech-language therapy

    Facial expressions are critical to any child's relationships with the world around him. Whether he is at home, at school or in another social setting, his interactions with others depend on his ability to convey his feelings (and respond to theirs). For these reasons, Moebius syndrome carries a particular set of challenges.

    The good news is that a child with Moebius syndrome can learn new ways of communicating how he feels: He can use his body language, physical posture and tone of voice to compensate. Speech-language pathologists will work with your child to develop and refine these means of communication, as well as helping him improve and control his breathing and swallowing.

    Counseling and psychosocial support

    Understandably, children with Moebius syndrome often feel discouraged, different and “left out.” Because they are unable to fully communicate with their facial expressions, they can be misconstrued as unfriendly, unobservant or antisocial by people who aren't familiar with their condition.

    Counselors, social workers, child psychologists and other mental health professionals can be a source of crucial support for your child as he learns to live with – and not be defined as – his disease. These experts will work with your child to build up his self-esteem, teach him skills for coping with feelings of frustration, anger and sadness and help him find constructive ways of talking about his condition with classmates, teachers and others.

    Boston Children's Hospital is home to a multidisciplinary team of experts who are dedicated to providing all of the assistance and information your child and family need. Your treating clinician will work with you to formulate a customized plan that helps your child reach his fullest potential in school, at home and in his personal relationships.

    Help for kids dealing with the stress of an illness
    The Behavioral Medicine Clinic at Children's helps kids and families deal with anxiety, sadness and fears about their illness, medical and surgical procedures and long-term care. Call 617-355-6688 to learn more.

    Coping and support 

    When your child has a chronic medical condition like Moebius syndrome, your family is dealing with many different concerns and worries. Not only are you focused on meeting all of your child's health needs; you are also grappling with a significant emotional toll that affects every member of your family.

    In addition to the clinical information offered on this page, Boston Children's Hospital has several other resources designed to give your family comfort, support and guidance. 

    Patient and family resources at Children's

    • Children's Center for Families is dedicated to helping families locate the information and resources they need to better understand their child's particular condition and take part in their care. All patients, families and health professionals are welcome to use the center's services at no extra cost. The Center for Families is open Monday through Friday from 8 a.m. to 7 p.m., and on Saturdays from 9 a.m. to 1 p.m. Please call 617-355-6279 for more information.
       
    • Children's Behavioral Medicine Clinic helps children who are being treated on an outpatient basis at the hospital—as well as their families—understand and cope with their feelings about:
      • being sick
      • facing uncomfortable procedures
      • handling pain
      • taking medication
      • preparing for surgery
      • changes in friendships and family relationships
      • managing school while dealing with an illness
         
    • The Experience Journal was designed by Children's psychiatrist-in-chief, David DeMaso, MD, and members of his team. This online collection features thoughts, reflections and advice from kids and caregivers about living with a variety of medical conditions, the “befores” and “afters” of surgery and going through many other medical experiences.
       
    • Children's Psychiatry Consultation Service provides several services, including:
      • short-term therapy for children admitted to one of the hospital's inpatient units
      • parent and sibling consultations
      • teaching healthy coping skills for the whole family
      • educating members of the medical treatment team about the relationship between physical illness and psychological distress
         
    • Children's Department of Psychiatry offers a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide.”  Topics in the booklet include:
      • talking to your child about her condition
      • preparing for surgery and hospitalization
      • supporting siblings
      • taking care of yourself during your child's illness
      • adjusting to life after treatment
          
    • The Children's chaplaincy is a source of spiritual support for parents and family members. Our program includes nearly a dozen clergy members—representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions—who will listen to you, pray with you and help you observe your own faith practices during your child's treatment. 
       
    • Children's International Center is a resource for patients and families from countries outside the United States. The center can provide assistance with everything from reviewing medical records to setting up appointments and locating lodging. Contact the center by phone at 01-617-355-5209 or via e-mail at international.center@childrens.harvard.edu

    Helpful links

    Please note that neither Boston Children's Hospital, the Department of Plastic and Oral Surgery nor the Facial Reanimation Program at Children's unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.


    Did you know?
    Children's has an Integrative Therapies Team, offering services like therapeutic touch, massage therapy, Reiki and more.
  • Research & Innovation

    At Children’s Hospital Boston, our care is informed by our research, and our discoveries in the laboratory strengthen the care we provide at each child's bedside. Children’s scientific research program is one of the largest and most active of any pediatric hospital in the world.

    In particular, our neurology and plastic and oral surgery researchers are yielding crucial insights into the causes and progression of disorders like Moebius syndrome, paving the way for promising new treatments.

    Some of our latest research endeavors include:

    Understanding how babies’ brains interpret facial emotions
    Charles A. Nelson, PhD, research director of Children’s Division of Developmental Medicine, is studying how babies and children process faces and facial emotion, using techniques that monitor electrical and metabolic activity in the brain.

    How do genetics influence eye movement disorders?
    Children’s neurologist Elizabeth Engle, MD, and her team are exploring the genetic causes of the complex eye movement syndromes known as congenital cranial dysinnervation disorders.

    Analyzing the genetics of misaligned eyes
    Children’s has initiated a large, ongoing study to determine the genetic basis for childhood strabismus. Because adult strabismus is often a condition that carries over from childhood, this research is highly pertinent to sufferers of adult strabismus, as well.

    Clinical trials

    Children’s is known for pioneering some of the most effective diagnostic tools, therapies and preventive approaches in pediatric medicine. A significant part of our success comes from our commitment to research—and to advancing the frontiers of health care by conducting clinical trials.

    Children’s coordinates hundreds of clinical trials at any given time. Clinical trials are studies that may involve:

    • evaluating the effectiveness of a new drug therapy
    • testing a new diagnostic procedure or device
    • examining a new treatment method for a particular condition
    • taking a closer look at the causes and progression of specific diseases 

    Children’s is involved in several multi-site clinical trials and studies. While all patients must meet strict criteria in order to be eligible for a clinical trial, your child may be eligible to take part in a study. Before considering this option, you should be sure to:

    • consult with your child’s treating physician and treatment team
    • gather as much information as possible about the specific course of action outlined in the trial
    • do your own research about the latest breakthroughs relating to your child’s condition 

    Taking part in a clinical trial at Children’s is entirely voluntary. Our team will be sure to fully address any questions you may have, and you may remove your child from the medical study at any time. 


    Spotlight on: Stem cells
    Learn how Children’s is using stem cells in the fight against neurological disorders.
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The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
- Sandra L. Fenwick, President and CEO
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