Condition

Pediatric Crouzon Syndrome

What You Need to Know

Crouzon syndrome is a rare birth defect that causes premature closing of several joints in a baby’s skull.

Key Symptoms

Children with Crouzon syndrome may have one or more symptoms, including:

Misshapen head
Bulging, wide-set eyes
Bone deformities in the middle of the face
Other characteristics

Diagnosis

At Children’s National Hospital, our pediatric team uses the following to diagnosis Crouzon syndrome:

X-rays
Diagnostic imaging
Genetic tests

Treatment

Treatment for Crouzon syndrome focuses on:

Reducing pressure inside the skull
Correcting the skull and facial deformities
Ensuring proper breathing

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Frequently Asked Questions

What is Crouzon syndrome?

What causes Crouzon syndrome in children?

What are the symptoms of Crouzon syndrome in children?

How is Crouzon syndrome diagnosed in children?

Physicians usually detect Crouzon syndrome at birth based on its distinctive physical signs. After examining and measuring your baby’s head, your pediatrician will use other testing methods for an accurate diagnosis, because skull deformities appear in other similar syndromes.

At Children’s National, our pediatric team uses the following tools to help diagnose Crouzon syndrome and any related syndromes:

X-rays to check for fused (missing) sutures on the sides or other areas of the head, or ridges along these sutures
Diagnostic imaging, especially CT scans, to check for fluid and pressure inside the skull, fused sutures, or ridges along sutures
Genetic tests to determine what syndromes may be involved for an accurate diagnosis and treatment

How is Crouzon syndrome treated in children?

Treatment for Crouzon syndrome focuses on reducing pressure inside the skull, correcting the skull and facial deformities, and ensuring proper breathing. At Children’s National, our treatment options include:

Surgery on the skull usually before 18 months of age
- Minimally invasive surgery for infants younger than 3 months to open skull sutures for normal skull and brain growth
- Traditional surgery for infants 6 months or older to correct the skull’s shape
Surgery to correct facial and jaw deformities or sleep apnea
Orthodontic surgery to correct dental problems
Speech therapy to help with speech and language development

Meet the Providers Who Treat Crouzon Syndrome

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Departments that Treat Crouzon Syndrome

Rare Disease Institute - Genetics and Metabolism

Children's National Rare Disease Institute (CNRDI) is a first-of-its-kind center focused exclusively on advancing the care and treatment of children and adults with rare genetic diseases.