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A Diagnosis We Never Expected – What I Want Every New Parent to Know

June 20, 2018
From the WebMD Archives

By Jessica Marquardt

In many ways, my five-year-old daughter Grace is a typical kindergartener. She enjoys hearing chapter books like Little House on the Prairie, shows an affinity for math, and can read sight words – but she can’t recognize my face.

Grace has cortical visual impairment (CVI). Her eyes are fine – she can see what we see – but her brain can’t make sense of it. For example, though Grace can “see” illustrations in a children’s book, she can’t interpret them. Grace has had CVI since birth – it seems she experienced a stroke in the womb that caused brain damage in her occipital lobes, where vision occurs. But when she was born, we had no idea about the stroke or the CVI – she seemed perfectly fine. It would be months before we started to suspect something wasn’t right.

I have to admit, I missed the early signs. Shortly after Grace was born, my mom died in a cycling accident, so I was both grief-stricken and overwhelmed as a new mom. I didn’t notice that my child looked through me instead of into my eyes. That she didn’t see toys and reach for them. That she was missing developmental milestones. That she wasn’t a textbook kid.

Thankfully, one of our family members recognized there was a problem and suggested that we seek a pediatric eye exam, and, at 8 months old, Grace was diagnosed with cortical visual impairment.

The diagnosis of CVI does have a bright side. Because CVI involves the brain and not the eye, we can harness the brain’s ability to change (neuroplasticity) in order to improve her vision. By systematically building connections in the brain, a child with CVI can see more. The earlier these brain exercises begin, the better a child’s vision will be.

The problem? I didn’t know that.

Despite our proximity to strong medical care, early intervention services and public schools, none of the doctors, therapists or teachers we encountered in Grace’s first five years of life mentioned that her vision could improve. Had my daughter been born blind, we would have received the guidance and resources necessary to help her excel. Instead, her ophthalmologist told us, “Wait and watch.” Poor advice considering the brain is most plastic from birth to 3.

What’s the disconnect? Even though CVI is the leading cause of pediatric visual impairment – affecting approximately 30-40% of children with visual impairments – it is not well understood in the medical and education communities.

Ophthalmologists treat the eye, not the brain. As a result, many kids go undiagnosed and many parents walk away ill informed. Kids also go without appropriate early intervention services and school education plans because universities that train teachers of the visually impaired (TVIs) do not require coursework on CVI. TVIs are well-versed in addressing the needs of students who are blind or have low vision; unfortunately, traditional ocular supports are inappropriate for kids with CVI. Moreover, so many children with CVI have multiple needs – some are nonambulatory, nonverbal and/or have other serious health concerns, like seizures or cerebral palsy. Unfortunately, CVI falls to the bottom of the hierarchy of needs to be addressed.

Grace is fortunate that visual access is her only barrier. And thankfully, we’re able to help Grace make gains with her vision through brain training.

Brain training takes intentional intervention. It’s not therapy; it’s a lifestyle. We use technology with backlighting and color to draw Grace’s attention to school lessons. We try to reduce complexity in her environment so that she doesn’t have competing sensory stimuli to contend with. We spend time in familiar places, rather than novel settings that are too overwhelming to process.

We also describe everything by its distinguishing visual features, so Grace understands what she’s seeing. The other day we passed a Jeep Wrangler on the road. Grace exclaimed, “Look, there goes a golf cart!” Of course, her younger sister knew this was not a golf cart. She knew this because she has had many more experiences seeing (and recognizing) cars on the way to school. But for Grace, I must intentionally teach her what she’s seeing. I say something like “Yes, that does look like a golf cart. It is open on all sides and has four wheels and a windshield. But it’s different from a golf cart. It’s a Jeep. It’s much larger than a golf cart and has a giant spare tire on the back.”

We recently finished the Little House on the Prairie series. If you’re familiar with the books, you may remember that author Laura Ingalls Wilder’s sister Mary goes blind after a bout of scarlet fever. I wasn’t sure how this storyline would affect Grace. After Mary’s fate was revealed, Grace asked me to repeat what I had read. Could it be true? A beloved book character, blind?

A smile of recognition crossed Grace’s face. You could almost see relief. Other children contend with challenging differences, and she is not alone. “I have a hard time seeing things, like Mary,” says Grace. “But she is blind. My vision is getting better. I see things that I couldn’t see before.”

* * *

If you’re looking for more information on CVI, here are some of the resources we’ve found to be exceptionally helpful:


Jessica Marquardt is a CVI parent advocate and writer for a technology company in North Carolina. She is the host of Kaleidoscope: The Cortical Visual Impairment Podcast and an active member of the Start Seeing CVI Advocacy movement. She urges anyone who cares for or educates a child with CVI to take advantage of the rich resources offered by the Perkins School for the Blind.

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