Tyrek’s mother and I must have spoken for two hours in the Pediatric Intensive Care Unit, covering every topic but the one that was glaring at us: death. A fourteen-month-old child is not supposed to die–and even though I knew the situation was dire, I couldn’t bring myself to face it. So I excused myself, sat down with her son’s chart and stared blankly at it.
I first met Tyrek and his parents when he was just three months old. Tyrek had Down syndrome, clubbed feet and a large sternal scar on his chest from surgery to repair a complicated heart defect. Despite his bad luck, Tyrek’s most impressive characteristic was his cheery disposition. His mother was a tall African-American woman with straightened hair and warm eyes that always appeared weary. Tyrek’s father stood well over six feet, a sharp contrast to the “little man” he held in his arms.
I became Tyrek’s pediatrician through a referral from a cardiologist who knew that I care for children with special health needs and that I happen to have a son with severe autism. Tyrek’s parents and I bonded quickly, our conversations more animated and collaborative than the typical doctor-patient …