Treatment of Congenital Central Hypoventilation Syndrome
If CCHS is suspected, a sleep study can help determine how severe breathing difficulties are, as well as what treatments will be needed. Other special respiratory function tests can be conducted as well. Complete cardiac and neurological examinations can rule out any other type of respiratory or muscular disorder. Early diagnosis and treatment are important to prevent serious complications caused by periods of low or no oxygen.

Treatment focuses on providing breathing support, usually through the use of a respirator (ventilator). Most people with CCHS will need a tracheostomy. Some children with CCHS will need a ventilator 24 hours per day. Others may only need breathing help when sleeping. In some individuals, a surgical implant in the diaphragm muscle can allow electrical stimulation of the muscle to control breathing.

Children with CCHS are able to lead active lives. They do, however, need close supervision while swimming or playing in pools, since their bodies may forget to breathe while underwater. CCHS is a lifelong condition that requires frequent monitoring and strict adherence to treatment. By catching the condition early and following treatment protocol, those with the condition can have an average life expectancy.