The visitors come from all wards of the hospital to catch a glimpse of our newborn daughter. “Some white,” the nurses whistle and coo into her plastic bassinet, using the vernacular emphasis that has become so familiar during my four years in Newfoundland. “That hair is some white.”
Sadie Jane is born on Boxing Day 2010. Overdue, she is unwrinkled and chubby, with perfectly formed features and a shock of white hair on her head. The ward pediatrician probes her pupils with a tiny flashlight. Afterwards, she looks past me and my husband, Andrew, past my parents, fixing her gaze on the spruce-clad hills behind the hospital. “You have a very fair, very healthy baby girl,” she says. We never see the doctor again.
My child is the fairest of them all. The weight of my pride is unbearable, too big for our tiny room in the maternity ward. I stage a photo shoot on my bed. Andrew takes the picture that will become Sadie’s birth announcement. I beam the image across the globe. The next day, Andrew takes Sadie in his arms and goes for a walk down the hall. They return trailed by a cleaner. “Is she an albino?” the woman asks, a note of alarm in her voice. “No,” I tell her firmly.
When Andrew recounts this tale to his mother over the telephone, her heart sinks. She and Andrew’s father, Don, asked the same question when they saw the first photographs. Don, a family physician in Georgetown, Ont., believes the pediatrician opted to spare us, for now.
Albinism, a genetic disorder, is both obvious and mysteriously complex. (As with the pejorative “retard,” those in the know don’t use the word “albino” anymore.) People with oculocutaneous albinism have little to no pigment in their skin, hair and eyes. Sunburns are quick and dangerous. Almost every baby with albinism will develop nystagmus, in which the eyes dart back and forth involuntarily. Daylight can be intolerable.
There are few experts in this field. When we visit our family doctor a week after being discharged from the hospital, she notes that Sadie has very fair skin, that her eyes are normal and that she is thriving. Thriving! My maternal pride swells. My baby is flourishing. My husband, however, is not doing well at all. He is distant and unreachable. What I don’t know is that, like his parents, Andrew is convinced our newborn baby girl has a rare genetic condition.
My in-laws arrive the next day. Don carefully examines Sadie, using the contents of his doctor’s tool kit. Later she sleeps in my arms while Andrew relays his father’s concern, releasing his own bottled fear in the process. To me, the suggestion is infuriating and impossible. I call my mother. “There might be something wrong with Sadie,” I tell her. There is a catch in my throat, and I can’t continue. My mother does not hesitate. “No one will love her any less.”