The determinants of communication ability in CHARGE Syndrome

Information about the factors that influence the development of communication in CHARGE Syndrome was obtained from parents of 31 children with CHARGE using a questionnaire, personal interview, telephone follow-up interview, and, in some cases, direct observation of the child with CHARGE. CHARGE is a syndrome with multiple congenital anomalies that typically affect physical health and, potentially, all sensory systems. The results of this study indicate that a majority of parents (77%-81 %) believe that both physical and sensory problems affected their child's overall development and the development of communication. A majority of the participants had numerous physical anomalies; 100% had vision problems; and 94% had hearing loss. The 31 participants were divided into two major communication groups: symbolic communication group (n= 18) and no symbolic communication group (n= 13). The symbolic group was subdivided into groups of participants who used speech as their primary mode of communication (n= l l) and those who used sign language (n=6). The no symbolic communication group was subdivided into a gesture group (n= l l) and a perlocutionary group (n=2). Comparisons were made between groups and subgroups to determine if there were relations between the prevalence of specific anomalies and the ability to communicate. The results suggest that development of communication may be compromised by the presence of severe neurologic involvement and severe growth deficiency. There were strong relations between the acquisition of symbolic language and two other factors: the ability to walk independently and total communication training during the first five years of life. Behavior was initially considered to be a potential factor in the development of communication, but parents unanimously felt that inappropriate behavior was a consequence of a poor ability to communicate.