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Finding out your child has a rare health condition can be scary and isolating. And you might feel like no one truly understands.

Moebius syndrome is an extremely rare congenital (born with it) condition that weakens or paralyzes certain cranial nerves in your child’s brain. And because it’s extremely rare, it can be hard to find others who can relate to what you and your child are going through. You might feel frustrated or overwhelmed and uncertain where to turn for help. Mixed emotions are natural — and it’s OK to feel however you’re feeling right now.

When it comes to Moebius syndrome, no two cases are the same. Your child’s symptoms depend on which cranial nerves are weak or paralyzed. Whether your child has conditions that affect their eyes, mouth, hands, feet or other areas of their body, our experts at Cleveland Clinic Children’s are here to help. We can design a treatment plan tailored to your child’s unique needs.

Why Choose Cleveland Clinic Children’s for Moebius Syndrome Care?

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Caring approach:

We’ll give your child the same kind of compassionate care we’d want our own children to receive. We know this diagnosis can feel overwhelming at times. We’ll walk with you every step of the way.

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Skilled collaborative providers:

Communication among specialists is very important when it comes to your child’s care. We’ll carefully gather a team of pediatric experts from many different specialties who’ll work closely together to manage your child’s symptoms. Meet our team.

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Virtual visits:

If getting to your child’s provider’s office is tough, you might be able to have a virtual visit for some appointments. Your child will get the same great care but from the comfort and convenience of home. All you need to get started is an internet connection and your smartphone, computer or tablet.

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National recognition:

U.S News & World Report consistently ranks Cleveland Clinic Children’s a top hospital in the nation. Newsweek has also named Cleveland Clinic a top hospital in the world.

Diagnosing Moebius Syndrome at Cleveland Clinic Children’s

There’s no specific test that can diagnose Moebius syndrome. That’s why we take the time to get to know you and your child. We want to hear about your child’s symptoms and how they impact your child’s quality of life. Once we have all the necessary information, we can make a diagnosis.

To receive a Moebius syndrome diagnosis, your child must:

  • Have had weak or paralyzed facial muscles since birth (but that haven’t gotten worse over time).
  • Not be able to move one or both eyes side to side (but be able to move their eyes up and down).

In some cases, we might run special tests to rule out other conditions like peripheral nerve damage and multiple sclerosis (MS).

What to expect at your first visit

Feeling a little nervous during your child’s first appointment is natural. That’s why we’ll take this time to learn a little more about you, your child and what daily life looks like for them. We’ll talk about:

  • What kind of symptoms your child has.
  • When you first noticed these symptoms.
  • How these symptoms affect your child’s daily life and routines. 
  • Whether you’ve tried other treatments before now.

We’ll also review your child’s medical history and give them a physical exam so we can check their overall health. 

Meet Our Moebius Syndrome Team

When you choose Cleveland Clinic Children’s for your child’s care, you and your child will work with a carefully selected team of pediatric healthcare providers from different specialties. Together, this team will create a personalized treatment plan for your child’s specific needs. Your child’s team might include:

Locations

Our healthcare providers see patients at convenient locations throughout Northeast Ohio.

Treating Moebius Syndrome at Cleveland Clinic Children’s

Moebius syndrome symptoms vary a lot from person to person. No two cases are the same. That’s why personalized treatment is important for helping your child live life to the fullest.

Our experts at Cleveland Clinic Children’s specialize in treating Moebius syndrome in people of all ages. There are several treatments available, depending on your child’s needs. Your child’s pediatric provider will help guide you to the best option for your child.

Nonsurgical eye treatments

Many children with Moebius syndrome have a hard time closing their eyes completely. This can cause chronic dry eye. A pediatric ophthalmologist may recommend lubricating eye drops or protective contact lenses to moisturize your child’s eyes and relieve these uncomfortable symptoms.

Corrective eye surgery

A pediatric eye surgeon can do strabismus surgery to correct conditions like crossed eyes (strabismus) and esotropia (a type of strabismus where the eyes turn inward). This procedure involves loosening or tightening your child’s eye muscles to correct misalignment.

Dentistry and oral surgery procedures

Children with Moebius syndrome often have congenital conditions that affect their teeth, mouth and jaws. These conditions include malocclusion (when your child’s teeth don’t fit together correctly), micrognathia (an underdeveloped jaw), microstomia (a small mouth) and cleft lip and palate. Pediatric dentists and oral surgeons can treat these problems when your child is at the appropriate age.

Nerve or muscle grafts

Nerve or muscle grafting involves moving nerve or muscle tissue from one area of your child’s body to another. This surgery can improve and promote movement in an area that has muscle weakness or paralysis. One common type of muscle graft is “smile surgery.” This procedure can help improve your child’s speech and facial movements.

Clubfoot treatment

If your child has clubfoot, we may first try stretching and repositioning your child’s feet with splints, casts or braces. If these treatments don’t work, surgery is another option your child’s provider may recommend. 

Follow-Up Care

If your child has Moebius syndrome, they may need multiple treatments over several years. Our pediatric experts are here to help guide you through this. We’ll complete each procedure when your child is ready — and we’ll continue to keep a close eye on their progress as they grow, even after they finish treatment.

Taking the Next Step

Hearing that your child has Moebius syndrome can feel overwhelming. You might not know where to start or what to expect during your child’s first several years of life. Talking to a pediatric healthcare provider early on is a good way to plan for your child’s treatment and set them up for success. Throughout it all, the experts at Cleveland Clinic Children’s will be there for you — answering any questions that come up and supporting you and your child every step of the way. 

Getting an appointment with Cleveland Clinic Children’s Moebius syndrome experts is easy. We’ll help your child get care.

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Getting an appointment with Cleveland Clinic Children’s Moebius syndrome experts is easy. We’ll help your child get care.


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