Patient Profiles - Central Sleep Apnea
| Adam |
Adam was diagnosed with congenital central hypoventilation syndrome (CCHS, or Ondine's Curse) soon after his birth in July 1990. Like many of the children with this condition, he spent much of his early life in and out of the hospital.
All non-invasive treatments including Bi-Pap, C-Pap, and negative pressure ventilation via chest shell eventually proved unsuccessful. Although his parents considered mechanical ventilation, they chose instead to have him implanted with a breathing pacemaker, which avoided a tracheotomy.
The majority of CCHS patients who have breathing pacemakers implanted are able to have their tracheostomies closed. This allows them to fully participate in the widest possible range of physical activities.
According to his mother, Adam is very active in his church youth group and plays varsity baseball for his high school. He is hopeful that he'll play baseball on the collegiate level.
| Sogi |
Sogi was born in August 1993 and soon after was diagnosed with Congenital Central Hypoventilation Syndrome, which was managed via mechanical ventilation.
In the summer of 2005, Sogi and his family traveled to the Children's Hospital of Los Angeles to be implanted with a breathing pacemaker. His pulmonologist and a surgeon traveled with him so they could apply what they learned about diaphragm pacing upon their return to Japan.
| Michaelene |
Michaelene was born in March 1987 and diagnosed with Congenital Central Hypoventilation Syndrome. In March 1998, she was implanted with a breathing pacemaker at the Children's Hospital of Los Angeles using a thorascopic technique pioneered there.
Prior to her breathing pacemaker, Michaelene had been hospitalized several times each year for pneumonia, sleep studies, etc. According to her mother, she now goes years between such events.
Michaelene is currently in college, and plans to attend nursing school following graduation. She enjoys snowboarding, skiing, and surfing. She has traveled across Europe and the United States with her breathing pacemaker, which has "dramatically improved her quality of life and increased her self-esteem."
| Shannon & Lauren |
Shannon and Lauren were born in April 1987, and are one of only two known sets of identical twins born with congenital central hypoventilation syndrome. Although switching to bi-pap ventilation enabled their tracheostomies to be closed, their activities were still limited by the large duffel bags of equipment they need to carry with them. In July 2003, Shannon and Lauren were implanted with their breathing pacemakers at the London Health Sciences Centre in Ontario, Canada.
Now, the sisters say they are normal teenagers and able to participate in any activity including long-distance running. They state that, although it took a long time to reach their goals, the breathing pacemakers have proven "even better than our expectations."