What is Crouzon syndrome?
Crouzon syndrome is a genetic condition in which the seams of the skull fuse in abnormal ways and affect the shape of the head and face. It is the most common type of syndromic craniosynostosis.
Crouzon syndrome shares many of the same features as Apert syndrome, including abnormal development of the eye sockets, prominent and widely spaced eyes, and slow development of the midface. In patients with Crouzon syndrome, the forehead generally appears more rounded with a more normally shaped nose, and the eyes tend to be more prominent. Another key difference is that patients with Crouzon syndrome do not have associated hand or feet anomalies present in other syndromes.
Common issues and complications
Crouzon syndrome presents many of the same associated issues as Apert syndrome, including airway compromise, sleep apnea, hydrocephalus and eye exposure issues. It is important for patients with Crouzon syndrome to be treated by a multidisciplinary care team that specializes in caring for children with these complex disorders.
The treatment of Crouzon syndrome is dependent upon both functional and appearance-related needs, and should be addressed immediately after your child is born. Because of the complex issues that can be associated with Crouzon syndrome, your child should be treated at a medical center where she will have access to pediatric specialists across the many clinical areas she may need.
At Children’s Hospital of Philadelphia, coordinated care of patients with Crouzon syndrome is typically managed through the Craniofacial Program, working closely with the Center for Pediatric Airway Disorders to address breathing issues, as well as the Pediatric Feeding and Swallowing Center to manage feeding issues. Eye protection or balance issues, such as strabismus, are coordinated through the Division of Ophthalmology.
Because every patient with Crouzon syndrome has unique problems, the timing and course of surgical treatment is highly individualized. It is important to see a surgeon with expertise in pediatric plastic and reconstructive surgery who specializes in treating these rare conditions. Learn more about the surgical treatment approach for syndromic craniosynostosis.
As your child grows, she should also have access to psychosocial support services to address any mental, social or psychological issues that accompany these conditions.
Watch our educational video to learn more about the services and treatment options CHOP offers to children with craniofacial conditions such as Crouzon syndrome.