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.
Funding Agencies:
National Resource Center for Deafblindness
Stiftelsen Mo Gard
Note: The Swedish Institute for Disability Research (SIDR). SIDR was established in 2000 as a joint initiative by Linköping University and Örebro University and in 2012 the University of Jönköping