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Saethre-Chotzen Syndrome

• A rare genetic disorder that is closely related to Crouzon syndrome.
• These syndromes belong to a group of genetic disorders that are characterized by premature closure of the cranial joints or sutures between various bones of the skull.


Distinct distortions to the face and head, including:
• A pointed-like head
• Webbing or fusion of certain fingers or toes
• An underdeveloped midface resulting in sunken cheekbones
• Prominent and/or wide-set eyes
• Low set hairline and drooping of the upper eyelids

Other features include:
• Vision problems
• Hearing loss and in some cases
• Mild to moderate mental retardation (less common)
• Nasal airway obstruction due to an underdeveloped midface and a high arched palate (These features may also cause speech problems and a cleft palate.)

What causes Saethre-Chotzen syndrome?

• Appears to be linked to a sporadic and rare gene alteration
• Parents are usually not affected and risk to future children is minimal
• The offspring of an Saethre-Chotzen patient have a 50-to-60 percent chance of inheriting the syndrome due to the dominant nature of the gene.


The craniofacial team at Children's Hospital & Medical Center will develop a carefully-staged plan that involves multiple surgeries to minimize the effects of the disorder.
• During your child's first year of life, surgery is performed to release the cranial sutures to allow for brain growth and expansion.
• Additional surgery may be required as indicated to allow for further brain growth later in life.
• Other surgeries may be required to correct the mid facial deformities as well as jaw surgery.

Many children will need to have eye muscle surgery performed by a pediatric ophthalmologist to correct the imbalance of the muscular structures of the eye in addition to the drooping eyelids.