CHARGE Syndrome-A Five Case Study of the Syndrome Characteristics and Health Care Consumption During the First Year in Life

•CHARGE syndrome is a highly complex medical condition.•The medical complexity leads to a significant consumption of health care during their first year.•The infant and family are subjected to a considerable amount of different health care contacts.

CHARGE syndrome is characterized by impaired vision and hearing, as well as physical malformations. The aim of this study is to describe the characteristics of the malformations and the health care consumption during the first year, in a Swedish sample having CHARGE syndrome. Three of the five individuals fulfilled all the traditional criteria for a clinical diagnosis of CHARGE syndrome. All infants were hospitalized from 26 to 230 days, subjected to 10-34 different diagnostic procedures and prescribed 10-28 different medications during their first year. Coordinated and individually adapted care is urged, as these infants and their families are in of need multiple health care contacts.