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Home care for ventilatory-assisted children improves psychosocial development and reduces medical costs compared with hospital care; yet, many ventilator-assisted children remain hospitalized for lengthy periods of time after they have [...]

Congenital central hypoventilation syndrome (CCHS or Ondine's curse) is an inborn abnormality that affects the control of breathing. Children suffering from this disorder experience frequent episodes of hypoventilation during sleep. These episodes can be life-threatening. Few studies have examined long-term medical and psychosocial outcomes in children with CCHS who survive. This study reports on the long-term outcomes of 12 children with CCHS. Initially, 13 children were identified for inclusion in the study, but one child died before hospital discharge. The other 12 children received ventilation support at home. The ages of the children averaged 7.5 years and they had received ventilation support for an average of 7 years. Growth was normal in all but two of the children. Three children suffered from persistent seizures. On tests of developmental assessment, eight of nine children showed significant delays in composite mental processing abilities, six had significant learning disabilities, and six showed delays in receptive language and the processing of sequential information. Additionally, seven children showed delays in nonverbal abilities and achievement, and eight had delays in the development of visual-motor integration skills. Psychosocial findings were generally positive. Two of six children who attended school had learning disabilities. These results indicate that children who have CCHS may have generally good long-term outcomes although earlier detection and treatment may help prevent later developmental delays. (Consumer Summary produced by Reliance Medical Information, Inc.)

Study objectives: The safety of home ventilators has been questioned. We collected data to study the following: frequency of home ventilator failure, apparent causes for the failure or malfunction, and [...]