Special Needs Now

Raising a Child With Albinism: An Encouraging Letter to My Younger Self

Dear Past Self,

It's March 2011. You are sitting in your car outside the public health office after attending a gathering of new mothers.

The baby is bundled in her car seat, asleep. Your head is on the steering wheel. You're replaying what the nurse said a few minutes ago. She'd peered into your infant's eyes and asked, with concern, "Does she smile at you? Does she make eye contact? Can she focus on an object?" No, no, and no, were your responses.

You left immediately after speaking with the nurse. On your way out, another mom asked if you were alright. You said, "Yes." What you wanted to say was, "I'm scared."

In a week your daughter, who you named Sadie, will be diagnosed with Oculocutaneous Albinism type 1 (OCA1) which is a lack of pigment in the hair, skin, and eyes that also affects vision. She will be near-legally blind. OCA1 is a recessive genetic condition — meaning that both parents need to be carriers in order for it to manifest in the child.

As your future self, I'm writing to tell you that this isn't a tragedy and that your baby is going to be fine. Here are five things you should know about raising a child with albinism:

1. You will feel relieved by the diagnosis. Albinism is rare and occurs 1 in 20,000 births in North America, but it's a stable condition, so it won't get progressively worse. Just think: some parents who have kids with difficult health issues never find the answers to their questions, but you have access to all the information you need to stop wondering.

2. Your baby will not spontaneously combust in sunlight. Yes, she has very little melanin to protect her from UV rays, but she's not allergic to the sun. Use sunscreen, hats, long sleeves, and pants to protect her skin, but for heaven's sake, don't run through sunny parking lots as if your baby might catch on fire!

3. Your baby can see, and her vision will be minimally corrected with glasses. In fact, she will use her limited sight and her other senses to navigate the world in ways that will astonish you. Also, she'll still have the special ability to spot the junk food in the checkout aisle!

4. You will feel moments of isolation. You will sign up for the National Organization of Albinism and Hypopigmentation (NOAH) conference but then consider withdrawing the night before. Don't back out! Meeting other parents of children with albinism, and people of all ages who share your daughter's condition, will be the best decision you ever make. You will come to see these people as an extension of your family.

5. You'll find it hard to imagine how the future looks. So here's a scene from the present: It's morning in March 2015. Sadie is wearing her favorite yellow skirt paired with rubber boots, and she's riding her scooter to preschool (where she has plenty of friends and is no different from any other kid). You are having trouble keeping up because there's the dog and stroller to contend with. Yes, a stroller. You'll have another child. Four years ago the doctors told you that any future children would have a 1 in 4 chance of also having albinism. That frightened you, but then, after a while, you realized it didn't matter. So you went ahead and got pregnant again. That's all I'm going to say for now because I've got to leave you some surprises to discover.

You should also know this: Today, Sadie is healthy, happy, wild, and carefree. Albinism will always be a part of her, but it doesn't define her.

Love,Your Future Self

Emily Urquhart is a journalist, folklorist, mama of two, and author of Beyond the Pale: Folklore Family and the Mystery of our Hidden Genes. Find her at emilyurquhart.ca, on Facebook (emilyurquhart), and on Twitter @emilyjurquhart.