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There are many ways you can help children and their families get the care they need.
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.
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.
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:
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.
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 Boston 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.
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 Boston Children's
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?
Boston Children's has an Integrative Therapies Team, offering services like therapeutic touch, massage therapy, Reiki and more.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”