Before our second son was born, we planned to name him Redd, unless he had red hair. He showed up with strikingly pale hair and eyes as blue as a summer sky. Nurses from other rooms came just to see the “baby with the white hair.” We thought he was just a beautiful baby, like his older brother Gage who also had blonde hair. Nothing seemed unusual to us at the time.
During his first month at home, three things stood out. First, his hair sparkled in the sunlight. My mother-in-law called him “a special little fairy.” Second, his eyes were always moving side to side, like he was watching something on the ceiling. We joked he might be seeing ghosts or watching an invisible tennis match. Third, his blue eyes sometimes looked red in certain lighting. We figured these were just baby quirks that would go away.
When Redd was about two months old, we searched online about eye movements in babies. The first result mentioned it was common in babies with albinism. I had never heard of it before. My husband read the description, white hair, pale skin, eye tracking and said, “He’s an albino!” I argued, thinking albinos had red eyes. We read more and watched videos. Still unsure, we made a doctor’s appointment.
Our pediatrician was surprised she hadn’t noticed earlier. Redd hadn’t opened his eyes during past visits because of how sensitive they were to light. She sent us to a genetics doctor and an eye specialist.
The genetics doctor took one look at Redd and said he likely had OCA1, a type of albinism that causes little or no pigment in the hair, skin, and eyes. He said the gene has to be inherited from both the mother and the father. I thought of my grandmother, who was pale, blue-eyed, and had platinum blonde hair. When I called her and asked if she was an albino, she laughed and said doctors had told her that before, but she never believed it.
At the eye doctor, we learned Redd had a few eye conditions, nystagmus (eye movement), strabismus (one eye turning), and iris transillumination (which caused the red-eye glow). She told us he would likely be legally blind and couldn’t drive. I cried the entire drive home.
Redd drew attention everywhere we went. People were fascinated by his white hair and asked many questions. Because of his sun sensitivity, we played outside early in the morning or late in the evening. We later had more kids, and our fourth son, Rockwell, was also born with albinism.
Adjusting to life with two sons who have albinism took time, buying hats, sunglasses, and sunscreen but it became part of our normal. Instilling confidence in our sons is the most important thing we can do.
Courtesy of Patricia WilliamsWe help Redd understand his condition, stand up for himself, and be proud of who he is. We use every opportunity to educate others. As my husband says, along with confidence, maybe some Kung Fu lessons won’t hurt either!
