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There are many ways you can help children and their families get the care they need.
The clinical features of Crouzon syndrome may include:
These facial abnormalities are a result of the following:
In addition to these physical characteristics, your child may have:
Some children with Crouzon syndrome may have developmental delays. However, most children with Crouzon are of normal intelligence. Our craniofacial neuropsychologist will help evaluate your child and recommend any developmental or cognitive interventions that might also be beneficial.
A specific mutation (change) in a gene called fibroblast growth factor receptor 2 causes Crouzon syndrome. This gene is also involved in other craniofacial syndromes such as Pfeiffer syndrome and Apert syndrome.
Experts do not understand the exact cause of these gene mutations.
Most parents who have a baby with Crouzon syndrome have normal genes. However, children with Crouzon syndrome can pass the gene on to their children. A parent with Crouzon syndrome has a 50 percent chance of having a baby that also has Crouzon syndrome.
If you have Crouzon syndrome and wish to have children, our geneticist can meet with you to discuss the risks and help you make a thoughtful, informed decision.
For an appointment with the Cleft and Craniofacial Center, more information or to obtain a second opinion for your child, please call us at 617-355-6309 or email our program coordinator, firstname.lastname@example.org.
For families residing outside of the United States, please call Boston Children's International Health Services at +01-617-355-5209.
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.”