CCHS Breathing Without Tracheotomy


Central sleep apnea is a breathing disorder in which individuals experience pauses in breathing during sleep.  When central sleep apnea is present from birth, it is called Congenital Central Hypoventilation Syndrome, or CCHS.  CCHS patients typically have adequate ventilation while awake, and hypoventilation with shallow breathing while sleeping.  However, patients with more severe cases often hypoventilate when they are both awake and asleep.


The Avery Diaphragm Pacing System provides breathing assistance by stimulating the phrenic nerve, causing the diaphragm to contract and a subsequent inhalation of air.  When the pulses stop, the diaphragm contracts causing exhalation.  Compared to Positive Pressure Ventilation (PPV) which forces air into the chest, diaphragm pacing provided by the Diaphragm Pacing System provides a more natural feeling for the patient.  It also provides additional benefits over mechanical ventilation for CCHS patients including:

  • Reduced Infections: Due to the reduction in suctioning, lack of percutaneous wires, and potential removal of tracheostomy tube in CCHS patients, patients typically see a significant reduction in infections.
  • Greater Mobility:  The compact size of the Diaphragm Pacing System allows patients greater mobility.  Patients experience greater mobility while using the device, and in cases where the device is not needed 24/7, transportation of the device for sleep and other times breathing assistance is necessary is significantly easier.


Monique is a patient who utilized the Avery Diaphragm Pacing System.  See her story and what she has been able to do since receiving her Diaphragm Pacing System here:


Many CCHS patients do not need breathing assistance 24/7, only when they are sleeping.  Consequently a large number of CCHS patients utilizing the Diaphragm Pacing System are also able to have their tracheotomy closed and utilize the Diaphragm Pacing System on an as-needed basis.  This allows them to truly participate in the widest possible range of physical activities.  Many patients are active in sports, outdoor activities, and many other endeavors which they would not otherwise be able to do.


If you, a patient, or a family member would benefit from the Avery Diaphragm Pacing System, please call us at 631-864-1600.  For help finding a provider for the Avery Diaphragm Pacing System, please see our provider maps.  We have qualified physicians worldwide who can provide more assistance.  If you would like to learn more about the Avery Diaphragm Pacing System system, please contact us for more information.


The Avery Diaphragm Pacing System System is the only diaphragm-pacing system with full pre-market approval from the USFDA and CE marking privileges under the European Active Implantable Medical Device Directive for both adult and pediatric use. In addition, its system of using small implanted radiofrequency receivers rather than electrode wires that pass directly through the skin may decrease a patient’s risk of infection and ongoing wound care management issues.

* Through a grant from the Christopher and Dana Reeve Foundation, the Children’s Hospital of Los Angeles has created a DVD presentation on their experience using the Avery Diaphragm Pacing System System in patients with CCHS. This video is a selection from that DVD presentation.

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