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Crouzon Syndrome

  • Overview

    Crouzon syndrome is a genetic birth disorder characterized by the premature joining of certain bones of the skull during development, which affects the shape of the head and face.

    • Most children with Crouzon syndrome are of normal intelligence.
    • Common features of this syndrome include:
      • wide-set, bulging eyes
      • crossed eyes (strabismus)
      • beaked nose
      • underdeveloped upper jaw
      • protruding lower jaw
      • overcrowding of teeth
      • high-arched palate

    How Children’s approaches Crouzon syndrome

    The Craniofacial Anomalies Program at Boston Children's Hospital provides a team approach to the evaluation, diagnosis and treatment of children and adults with congenital or acquired facial deformities. If your child has been suffering from one of these conditions, our doctors can help.

    Expert team

    Our program is staffed by an experienced team of clinicians, all with specialized training in the care of children with craniofacial anomalies.

    • Each year we treat more than 500 patients, 250 of them new patients, making our program one of the most experienced programs of its type in the country.

  • In-Depth

    What causes Crouzon syndrome? 

    Some cases of Crouzon syndrome are the result of an inherited gene. In cases where there is no family history of Crouzon syndrome, doctors believe the cause to be a genetic mutation.

    What are the chances of having a child with Crouzon syndrome?

    Crouzon syndrome affects approximately 1 in 25,000 babies.

    • If one parent has Crouzon syndrome, there is a 50 percent chance that the child will be born with the disorder.

    What problems are associated with Crouzon syndrome?

    In addition to the physical characteristics common to the condition, your child may have the following problems:

    • dental problems due to crowded teeth and a narrow palate
    • poor vision
    • ear diseases and hearing loss (in about 50 percent of children)
    • difficulty breathing due to small airway
    • possible fluid on the brain (hydrocephalus)
  • Tests

    How is Crouzon syndrome diagnosed?

    Your child's doctor can usually diagnose Crouzon syndrome at birth by assessing the signs and symptoms of your baby.

    Diagnostic tests that may be performed to confirm the diagnosis include:

    • X-ray - A diagnostic test that uses invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs on film.
    • Computerized tomography scan (Also called a CT or CAT scan) - A CT scan shows detailed images of any part of the body, including the bones, muscles, fat and organs. CT scans are more detailed than general x-rays.
  • How is Crouzon syndrome treated?

    Your child should be evaluated by members of an experienced, interdisciplinary team.

    • No single specialist can manage Crouzon syndrome and its associated problems, as treatment usually involves many areas of specialty.

    Depending on the severity of the disorder, your child may require some or all of the following surgeries:

    • surgery to re-shape the skull
    • jaw surgery
    • surgery to correct eye problems
    • orthodontics, to straighten the teeth

    What's the outlook for my child?

    After the appropriate surgical treatments, your child should go on to lead a happy, healthy life.

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Contact the Craniofacial Anomalies Program

  • 1-617-355-6309
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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