Shannon and Lauren are 33-year-old identical twins living with CCHS. From birth to age 8, ventilation was provided via tracheostomy and then BiPap was used from age 8 to 16. In 2003, Shannon and Lauren received the Avery diaphragm pacers at London Health Science Centre in London, Ontario, Canada. The surgery was a success and they have been breathing ventilator free since 2003.
Lauren required a revision surgery in 2018 while Shannon has not required a revision surgery. The Avery diaphragm pacers allowed Shannon and Lauren to attend university independently and travel extensively. In 2016, Shannon and Lauren both became mothers and the pacers ensured mobility and safety during sleepless nights tending to their infants. Lauren is a kindergarten teacher while Shannon is completing her doctorate degree in youth mental health.
Source: ABD-PP-004, Rev B 12/2020