A new device for the care of Congenital Central Hypoventilation Syndrome patients during sleep

Congenital Central Hypoventilation Syndrome (CCHS) is a genetic disease that causes an autonomous nervous system dysregulation. Patients are unable to have a correct ventilation, especially during sleep, facing risk of death. Therefore, most of them are mechanically ventilated during night and their blood oxygenation is monitored, while a supervisor keeps watch over them. If low oxygen levels are detected by the pulse-oximeter, an alarm fires; the supervisor deals with the situation and, if there is neither a technical problem nor a false alarm, wakes the subject, as CCHS patients usually recover from hypoxia when roused from sleep. During a single night multiple alarms may occur, causing fractioned sleep for the subject and a lasting state of anxiety for supervisors. In this work we introduce a novel device that can: acquire realtime data from a pulse-oximeter; provide a multisensory stimulation (e.g. by means of an air fan, a vibrating pillow, and a buzzer), if saturation falls under a threshold; stop the stimulation if oxygenation recovers; wake up the patient or the supervisor if the suffering state lasts beyond a safe interval. The main aim of this work is to lessen the number of awakenings, improving the quality of sleep and life for patients and their supervisors, and to increase young and adult CCHS patients autonomy. Initial testing of the device on a CCHS patient and his supervisor has provided encouraging preliminary results.