Those diagnosed with Congenital Central Hypoventilation Syndrome (CCHS) would typically require Positive Pressure Ventilation (PPV) in order to regulate breathing, by utilizing a tracheotomy. For some, this means being dependent on a ventilator 24 hours per day which requires carrying one with them at all times. This can severely limit the amount and types of...
Fourteen year-old Sedarius was recently featured on WSB-TV Atlanta as the first pediatric patient to receive surgery to implant a diaphragm pacemaker in the state of Georgia. See his story below: Sedarius was diagnosed with CCHS when he was eight years old, and required a tracheotomy and ventilator to breathe while he slept. The Avery Breathing...
Elise has Congenital Central Hypoventilation Syndrome (CCHS). Shortly before her ninth birthday, Elise and her family were told by her doctor about the Avery Diaphragm Pacer because Elise would get at least two infections a year. Elise was implanted on November 14, 2012 at the Tulane University Hospital by Dr. Steiner. Six weeks after being...
In 2016, Niki, a young Hungarian 21 year old woman became a quadriplegic patient after a serious motorbike accident. The CT and MRI imaging confirmed the fracture of the C II vertebra with the compression of the spinal cord. After the stabilization of the cervical vertebra, a tracheotomy was performed. 10 months later, her hemodynamic...
In 1989, a motor vehicle accident rendered Arlyne a C1-C2 quadriplegic Arlyne found out about the Avery Diaphragm Pacer from Dr. Quioto and in 1993, she was implanted with the Avery system at Methodist Hospital by Dr. Michael Turner. In her spare time Arlyne is very active in her church and she goes out with...
Victor was born in January 1998. Victor is diagnosed with Central Apnea. Victor was implanted on September 1st 2015. He was implanted in Brazil by Dr. Rodrigo Sardenberg. Victor and his family were watching a news program when they found out about the Avery Diaphragm Pacemaker. The segment was on a child that was going...
5th International CCHS Conference: The Future is NOW Priorities, Partnerships, and Patient Voice When: June 20-23, 2018 Where: Chase Park Plaza, St. Louis, MO www.chaseparkplaza.com You can register for the conference at www.cchsnetwork.org The CCHS Network, Children’s Hospital, Los Angeles, Seattle Children’s Hospital, and the European Union Congenital Hypoventilation Syndrome (EUCHS)...
Perihan fell down a mobile staircase sustaining a spinal cord injury at the neck level. Perihan’s neurosurgeon, Professor Sedat Cagli, at Ege University Hospital, Izmir Turkey told her about the Avery Diaphragm Pacer and in February 2012 she was implanted. Thirty days later, she began using the pacer and now paces 12 hours a day....
In 2011, Cassandra started having several cases of pneumonia which led to a diagnosis of hypersensitive pneumonitis. Even though the doctors aren’t 100% sure of what Cassandra had, they referred to it as Acquired Central Hyperventilation Syndrome. Cassandra was sent to Uppsala Sweden because the doctors there are very experienced in treating those with diaphragm...
In 1994, Khaldoon, a 17-year old honors student and swimming champion from Syria, suffered a spinal cord injury in a diving accident leaving him a ventilator-dependent quadriplegic (tetraplegic). 16 years later, he was implanted with the Avery Breathing Pacemaker and was pacing 24/7 less than one year post surgery. In 2015, after four years of...
