Congenital Central Hypoventilation Syndrome

Marissa

United States

Marissa was born in New York in 1989. She was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS, or Ondine’s Curse) soon after birth. She was vented by tracheostomy since she was 3 weeks old until she was 18 years old.

In 2007 she was implanted with her breathing pacemaker at Columbia University Medical Center.

Since having her tracheostomy closed, she has traveled extensively around Europe, Southeast Asia, and Israel.


sogiSogi

Japan

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.

 

 


twinsShannon & Lauren

Canada

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.”