Todd and Kelsey Johnson (left and center), along with their 22-month-old daughter Seda, visit with Christine Roman-Lantzy in Friendship Park in July. (Photo by Ryan Loew/PublicSource)
by Amy Whipple, PublicSource
Christine Roman-Lantzy welcomed the Johnson family into her office at West Penn Hospital. Kelsey, Todd and their 22-month-old daughter Seda had traveled five hours from Virginia to have Seda assessed for cortical visual impairment [CVI].
At four and a half months, an ophthalmologist said Seda couldn’t see much more than shadows and lights, implying there was nothing to be done. “That was really hard,” Kelsey said at their July appointment in Pittsburgh, “and we didn’t really agree.”
By chance, Kelsey learned of CVI, a neurological condition where the eyes and optic nerves are structurally intact, but the brain has trouble processing visual input. It accounts for about 30-40% of children with visual impairments, more than any other cause, and can be the result of premature birth, epilepsy or traumatic brain injury, among other reasons.
She joined a 9,000-member CVI Facebook group where Roman-Lantzy’s name came up for her internationally renowned assessment, the CVI Range, that she offered through her Pediatric VIEW program at West Penn Hospital. Kelsey and Todd were surprised to get an appointment in what they would later learn would be Roman-Lantzy’s final months at the hospital.
“I diagnosed her when she was five months,” Kelsey told Roman-Lantzy, based on what she read online. A neuro-ophthalmologist diagnosed Seda when she was a year old. Medical doctors, however, can only give a yes or no diagnosis. To learn more about a child’s abilities and needs within CVI requires a teacher of the visually impaired [TVI].
As with many of the parents she has met, Roman-Lantzy knew things weren’t adding up for some of the children she worked with as a TVI in the 1970s. But she didn’t know why, so she taught them as if they had ocular impairments. She didn’t know then she was missing the opportunity to better help them engage and improve their vision with interventions that capitalize on neuroplasticity (the brain’s ability to rewire itself).
In the ’80s, she came across a description of CVI traits written in an education journal by neurologist Dr. James E. Jan. She knew immediately this was the information she had been missing.
“I feel like in the early part of my career, I did it wrong so much,” she said. “I know to this day I did them no good. ….I vowed not to do it wrong again.”
Assessing children for functional vision through an outreach program at the Western Pennsylvania School for Blind Children pushed her to develop the CVI Range in the early ’90s. Parents of children with CVI reported their children’s affinity for lights, ceiling fans (movement) and Big Bird. They looked away before reaching for a toy and seemed to look through their parents rather than into their eyes.
“She’s not seeing our soul,” Kelsey said of Seda.
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