Crouzon syndrome is the most common type of craniosynostosis syndrome, which occurs when a genetic birth defect causes the bones in a baby’s skull to close (fuse) together prematurely.
What Is Crouzon Syndrome?
When a baby has Crouzon syndrome, multiple bones of the skull fuse together abnormally. These conditions include:
- Syndromic craniosynostosis: In infants with Crouzon syndrome, more than one of the spaces (sutures) between the skull bones fuse together too early. When this happens, the bones put pressure on the brain and may keep it from growing normally.
- Midfacial hypoplasia: Crouzon syndrome can cause the bones of the jaw, cheeks, eyes and ears to grow abnormally. This may cause issues with vision, hearing and breathing. Babies with midfacial hypoplasia are usually identified by their bulging eyes and jaw underbite.
We advise parents to treat Crouzon syndrome as soon as possible. This helps avoid brain development complications and improves your baby’s appearance.
How Is Crouzon Syndrome Treated?
If your child is diagnosed with Crouzon syndrome, he or she will need surgery. At St. Louis Hospital, we take a multidisciplinary approach to treating children with Crouzon syndrome.
We bring together all the experts your child may need for ongoing care from specialty areas including:
- Plastic surgery
- Neurosurgery
- Developmental psychology
- Speech and language therapy
- Dentistry and orthodontics
- Ophthalmology
- Nursing
- Ear-nose-throat (ENT)
- Genetics
We offer two options for craniosynostosis surgery:
- Endoscopic craniosynostosis repair. St. Louis Children’s Hospital helped pioneer and refine this minimally invasive procedure. Our surgeons have over a decade of experience performing it. After endoscopic craniosynostosis repair, your child will need to wear a helmet for several months. We will help you make all the arrangements for this. Learn more about post-surgical helmeting.
- Open craniosynostosis repair surgery. For children who are not candidates for minimally invasive surgery, our expert surgeons use a traditional technique to achieve excellent results.
What Causes Crouzon Syndrome?
Crouzon syndrome is a genetic birth disorder. Babies born with Crouzon syndrome often have no family history of the disorder. Their genetic defect is random. But individuals with Crouzon Syndrome can also pass on the disorder to their children.
How Is Crouzon Syndrome Diagnosed?
Our doctors diagnose Crouzon syndrome starting with a physical examination. They may also order a quick, painless imaging scan (X-ray or CT) and a simple genetic test to confirm their diagnosis. Your baby will not undergo any invasive medical testing.
Contact Us
If you are concerned your baby might have Crouzon syndrome, please ask your pediatrician for a referral or call us for an appointment at 314.454.5437 or toll-free at 800.678.5437. We will gladly evaluate your child.