An Exploration of the Cognitive, Physical and Psychosocial Development of Children with Apert Syndrome

Abstract

Apert syndrome is a rare condition, with a birth prevalence of approximately one in 65,000. This article provides an up-to-date review of the literature on Apert syndrome from a variety of perspectives, ranging from surgical management to personal accounts. The purpose of the review is to provide a holistic description of the syndrome which should be of assistance to those interested in understanding the impact of Apert syndrome on children and young people with the syndrome. Children with Apert syndrome are at risk for a range of impairments, disabilities and consequent complex needs which can have implications for their personal development, social inclusion and education. As a consequence, those involved in the care of children and young people with Apert syndrome have the challenging task of balancing the management of surgical interventions alongside the needs of the growing child.

Keywords:

• Apert syndrome
• craniosynostosis
• FGFR2
• hand anomaly
• hearing impairment
• social inclusion
• syndactyly
• visual impairment

Acknowledgements

This work acknowledges the very important and significant contributions of professor Richard Cowan and Jenny Houssart, UCL Institute of Education, University of London. Special thanks must also go to professor Gerta Vrbova, Emeritus Professor of Developmental Neuroscience, University College London, University of London and to Tim Webb, assistant head, Fleecefield Primary School, London.