When Gregory was born, the doctors were concerned about baby Gregory’s eyes protruding more than usual. Follow-ups with his paediatrician led to CT scans at SickKids to rule out tumours, but those all came back negative. Then suddenly at six weeks old, Gregory began vomiting blood, leading to surgery at SickKids for pyloric stenosis, a condition that affects the opening between the stomach and small intestine. His eyes, however, remained a mystery.
It was not until a routine visit to the paediatrician at a year-and-a-half old, and a subsequent consult with the medical director of the SickKids Centre for Craniofacial Care and Research that led to the diagnosis that changed everything. Gregory had Crouzon Syndrome, a rare disorder affecting the growth of the bones in his skull. The mystery of his eyes was now solved as doctors finally understood why he had such shallow eye sockets. Crouzon Syndrome also explained Gregory’s underdeveloped upper jaw, his nasal airway obstruction and his recently diagnosed hearing loss.
This began a chain of events that led Gregory to call SickKids his “second home” as barely a year passed before the two-year-old began complaining of severe headaches. Gregory has had his skull expanded a total of four times – first at age 3, then age 9, then again at age 11 and most recently at age 12. These huge operations involved teams of specialists working together especially since Gregory also has the complication of having a Chiari Malformation and a shunt in his brain requiring frequent intracranial pressure monitoring and shunt revisions.
Shunts unfortunately rarely last a lifetime, and when Gregory’s first shunt failed, the buildup of pressure in his brain was enough to damage his optic nerve, rendering him legally blind by the age of 11. This was a terrible blow to Gregory and his family. However, Gregory has taken it all in stride, choosing to “move on” and making the best with what he has.
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