Craniosynostosis Syndromes

A baby with single suture synostosis that's not part of a syndrome usually doesn't have any functional problems, such as difficulty breathing or feeding. Surgical release of the closed suture may be necessary, and if so, would usually be done during the first year of life.

An infant with a craniosynostosis syndrome should be seen immediately after birth by a nurse from the Center for Craniofacial Anomalies to make sure the infant can adequately breathe and feed. Shortly after being discharged from the hospital, the child should be seen for a full team evaluation at the center. The skull abnormalities require early attention, although the timing varies. A surgical procedure to advance the forehead is usually done before the baby is 6 months old.

A surgical procedure called a midface advancement brings the cheekbones and upper jaw forward, providing greater protection for the eyes and improving the child's airway. Because the upper jaw is usually too small, children with these syndromes can have an underbite and severely crowded teeth. Orthodontic treatment with braces is therefore necessary in combination with surgical procedures. Timing for the midface advancement and orthodontics is based on a number of factors — they may be done early in life or after growth is completed, depending on the particular needs of the child.

In addition, children with Apert syndrome have syndactyly, or webbing, of the hands and feet, which usually requires early surgery to improve mobility and function.

It's important for children to be evaluated for a number of problems that are associated with craniosynostosis syndromes. A pediatric pulmonologist, or lung specialist, should address any breathing difficulties the child may have. Evaluation by an ophthalmologist, or eye specialist, is also important, especially if the eyelids don't adequately protect the eyes. Hearing tests and speech evaluations should be performed at intervals to make sure the child's speech and language development is on track.

A child with a craniosynostosis syndrome may encounter social and emotional challenges unique to these syndromes. Support organizations and resources are available for children and their families.

Reviewed by health care specialists at UCSF Benioff Children's Hospital.

Related Information

UCSF Clinics & Centers

Craniofacial Center
1825 Fourth St., Fifth Floor, 5C
San Francisco, CA 94158
Phone: (415) 476-2271
Fax: (415) 476-9513
Appointment information

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