National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Carpenter syndrome



I would like to have some information about Carpenter syndrome. I can find information about the physical aspects of the syndrome. Are there are certain behavioral characteristics?

Children who have syndromic craniosynostosis are at risk for developing behavioral and emotional problems.[1] However, we are unaware of studies regarding behavioral characteristics of people with Carpenter syndrome specifically. It has been reported that people with craniosynostosis in general may continue to have cognitive, psychological, speech, and behavioral problems, even after surgery that allows for normal cranial growth and development.[2] Children with craniofacial abnormalities may have stigmatizing conditions such as speech defects and facial differences, which are reportedly associated with negative psychosocial outcomes such as poor psychological adjustment.[3]
Last updated: 2/5/2015

We hope this information is helpful. We strongly recommend you discuss this information with your doctor. If you still have questions, please contact us.

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GARD Information Specialist

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  1. Maliepaard M, Mathijssen IM, Oosterlaan J, Okkerse JM. Intellectual, behavioral, and emotional functioning in children with syndromic craniosynostosis. Pediatrics. June, 2014; 133(6):e1608-1615.
  2. Hidestrand P, Vasconez H, Cottrill C. Carpenter syndrome. J Craniofac Surg. January, 2009; 20(1):254-256.
  3. Broder HL, Smith FB, Strauss RP. Developing a behavior rating scale for comparing teachers' ratings of children with and without craniofacial anomalies. Cleft Palate Craniofac J. November, 2001; 38(6):560-565.