My name is Gail and my son Blair was born in September 2009. Soon after Blair’s birth, he was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS), and Hirschsprung’s disease. CCHS is a multisystem disorder of the central nervous system where, most dramatically, the automatic control of breathing is absent or impaired. A CCHS patient’s respiratory response to low blood oxygen saturation (hypoxia) or to CO2 retention (hypercapnia) is sluggish during awake hours and absent to varying degrees during sleep, serious illness, and/or stress. Hirschsprung’s disease is a blockage of the large intestine due to improper muscle movement in the bowel. It is a congenital condition, which means it is present from birth.
The combination of both disease is known as Haddad Syndrome. After a long seven month stay in the hospital, Blair and his ventilator finally came home!
Blair is now a healthy, happy, little boy who enjoys all things a toddler should enjoy!