Binder Syndrome

Binder syndrome is a rare disorder that affects the bones of your face. It’s congenital, meaning it’s present at birth.

Babies with this condition have underdeveloped bones in their mid-face region. If your child has this condition, it may impact how they eat and breathe.

Binder syndrome is rare, occurring in less than 1 per 10,000 babies. Surgery during adolescence can help reconstruct facial bones.

Other names include:

• Binder phenotype
• Binder type nasomaxillary dysplasia
• Maxillonasal dysplasia
• Nasomaxillary hypoplasia

Binder syndrome signs and symptoms

This condition happens when the bones in the middle of your face don’t develop the way they should. Signs and symptoms vary from person to person but may include:

• Flattened nose and upper lips
• Lower jaw that sticks out
• Misaligned upper and lower teeth (malocclusion)
• Triangular or half-moon-shaped nostrils

Binder syndrome causes

Experts don’t know the exact cause. They believe it could be a combination of genetic and environmental factors.

Risk factors

Risk factors that may increase your risk of having a baby with Binder syndrome include:

• Alcohol use during pregnancy
• In utero exposure to certain drugs, including phenytoin or warfarin
• Trauma to your baby during birth
• Vitamin K deficiency during pregnancy

How to lower your risk

There’s no guaranteed way to make sure your baby isn’t born with Binder syndrome. But here are some guidelines for reducing the overall risk of birth defects (congenital conditions):

• Attend all your prenatal appointments.
• Avoid alcohol, tobacco and recreational drugs during pregnancy.
• Take folic acid (discuss with your healthcare provider first).

If you or someone in your biological family has Binder syndrome, you may want to consider genetic counseling. A genetic counselor can help assess your baby’s risk for the condition.

Complications of Binder syndrome

Because this condition affects the bones near the middle of your child’s face, they could experience difficulties with:

• Breathing
• Eating
• Hearing

Your child’s healthcare provider will monitor these issues and recommend treatment if necessary.

How doctors diagnose Binder syndrome

Healthcare providers usually diagnose Binder syndrome based on your baby’s facial appearance. They may also take imaging tests to view your baby’s bone structure and confirm or rule out the diagnosis. These imaging tests may include:

• CT scans
• MRIs
• Ultrasounds

How is this condition treated?

Binder syndrome treatment varies based on symptoms and may include:

• Maxillofacial surgery: A surgeon may use bone or cartilage grafts to reshape your child’s nose (rhinoplasty). They may also do something called an osteotomy, which repositions their jaw. This step usually happens during the late teenage years.
• Orthodontics: Orthodontic treatment can help bring your child’s teeth and jaws into correct alignment. In minor cases, orthodontics may be the only treatment your child needs. Or they might need to wear braces for a period before or after surgery.

When should I see my healthcare provider?

If your child has facial abnormalities, talk to their pediatrician right away. They can do an exam and run tests to get a diagnosis.

If you already know your baby has Binder syndrome, you’ll need to take them in for regular checkups. During these visits — which will continue into adolescence — your child’s care team will track their growth and design a treatment plan based on their unique needs.

Once your child is a teenager, they can typically begin orthodontics or have corrective surgery.

What can I expect if I have Binder syndrome?

The outlook is generally positive. After treatment, most people don’t need to see their healthcare providers as often.

Binder syndrome life expectancy

This condition doesn’t impact your life expectancy. People with the condition live just as long as people without it.

Do kids with Binder syndrome have other abnormalities?

Some children with this condition have other health conditions, like:

• Cleft palate
• Congenital heart defects
• Crossed eyes (strabismus)
• Spinal deformities

If your child has Binder syndrome, it doesn’t automatically mean they’ll develop any of the above conditions. Ask your healthcare provider what to expect in your child’s situation.