Ondine's Central Hypoventilation Syndrome is a condition in which an infant or child breathes inadequately for themselves and needs support from a ventilator .It is a disorder where the breathing control centres in the brain are affected. There is no known cause. In severe cases, respiratory support may be needed 24 hours per day, but most cases require support just at night time or when the child is asleep. The condition does not appear to improve and ventilation is likely to be required long term. Ventilatory support may be given from a positive pressure ventilator via a nasal mask or tracheostomy, or with negative pressure in a perspex chamber.
Some children have an associated hearing problem, development delay or epilepsy.
The group was set up as a support network for the families of children with Congenital Central Hypoventilation Syndrome. It was established in 1995 by the mother of an affected child. The group responds to enquiries from families and professionals. Subscription Donations only Contact a Family is a UK charity which helps families who care for children with any disability or special need. We are a main source of information about rare disorders and are able to assist affected adults as well as children.