Strabismus – More Than a Cosmetic Situation | Part 1

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Part 1 – Our strabismus burden

Everyone loves baby photos! Those sweet cheeks and big, bright eyes… who could resist?! When my daughter turned five months old, we knew she was undeniably cute, but something was off. There was something in her expression that I turned away from and chose to share other photos instead. At first, I couldn’t put my finger on it… but when I finally did, it hit me like a ton of bricks. My daughter had strabismus.

The realization absolutely broke my heart. This cross-eyed look was the look that people would see first, not my bright, beautiful daughter. I was scared of potential bullying, even if it was years away. While she was smiling and giggling away, I was crying! My poor little girl had no idea what the world already thought of her.

It’s normal for newborns to have trouble coordinating their eyes. Babies usually outgrow it by 4 to 6 months without intervention. We thought we were in the clear, as our daughter didn’t seem to have those newborn eye moments. However, strabismus or “lazy eye” tends to run in our family. It was on our radar, and for good reason.

My mom has had a rough road with strabismus. Back in the 60’s, she received minimal treatment and failed to gain strength in the weaker eye. She did eventually have surgery, but at an age (and in an era) where it was only “cosmetic.” She never acquired depth perception. As a kid, it limited her ability to comfortably participate in activities. As a teen and adult, driving was and continues to be a profound challenge.

Determined not to let my daughter run into those same limitations, I pushed to see a pediatric ophthalmologist early. My baby was young enough to still develop normal vision with proper intervention. Surely doctors had learned more over the past 50 years and could give my daughter better care?

Your Windows to the World

Unfortunately, the social interpretation of eye disorders hasn’t changed much over time. Strabismus is no stranger to bullying and prejudice. People with the disorder are often assumed to be mentally handicapped.

“Strabismus creates a significant negative social prejudice. These biases can have a detrimental impact on socialization and employability. Treatment of strabismus may positively alter perceived characteristics of individuals and improve their ability to socialize normally and obtain employment.”

And here’s the kicker:

“[T]he treatment of strabismus should not be considered cosmetic even when there is no hope of improving [their] binocular vision.”

(View the research paper)

Can you believe that? Eyes disorders distract so profoundly that surgery can be performed solely for everyone else’s benefit. The patient goes through pain, stress, and risk to be treated equally. Does something sound wrong with this balance? It’s called ableism.

Today, such a surgery is considered “restorative.” Eye contact and healthy social interactions are so important to one’s success in life that it’s more than a cosmetic preference – it’s essential to one’s livelihood.

This wasn’t a wipe of her face or brushing back a stray hair… I couldn’t fix this for her. We started seeing a pediatric ophthalmologist to treat her strabismus right away. 

You can read part 2 of our story here

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Rachel
Rachel grew up in a small town south of Madison, across the street from her high school sweetheart, Adam (although they didn’t actually meet until one fateful band and choir trip to New Orleans!) College and love took them to Milwaukee for a decade, where Rachel discovered her love for pastry arts. They are now settled back in Madison (much closer to the grandparents!) with two kids. Cassia and Kairos are seven years apart in age but already have an amazing and comical bond. Rachel has faced a confounding path of medical set-backs over the past few years, which have impacted every facet of daily life and plans for the future. With the tremendous support from her family, she strives to use her experience to shed light on the challenges faced by disabled parents.

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