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.
Starting with what parents described, Roman-Lantzy sought to capture the impact of each of the 10 visual and behavioral characteristics of CVI. She found that a zero to 10 scale, where zero means no visual response and 10 is typical vision, broke down into three phases with distinct goals a child could work toward: 1) building visual responses; 2) making vision meaningful; and 3) refinement of vision.
At the encouragement of neonatologist Dr. Giovanni Laneri, Roman-Lantzy established Pediatric VIEW in 1999. “We did not understand what CVI was until she documented and clarified it,” he said. Roman-Lantzy’s work “changed the way we manage vision impairment.”
Pediatric VIEW grew by word of mouth, later boosted by social media. Families came from across the world to seek her expertise, which she also offered to West Penn’s NICU patients.
According to an Allegheny Health Network fundraising website, West Penn is “the only NICU that conducts a systematic screening for infants at risk for CVI.” They estimate that Roman-Lantzy has assisted almost 1,000 families.
In mid-May 2021, Dr. Brian Johnson, president, chief executive officer and chief medical officer of West Penn, told Roman-Lantzy the hospital would be “sunsetting” the program that August. “I almost fell over,” she said.
Allegheny Health Network, the parent organization to West Penn, did not respond to repeated requests for additional information about the decision.
“I do not plan for Pediatric VIEW to end,” she wrote on the CVI Resources website. She assured parents that she and her assistant were working on accommodating families who filled her schedule through June 2022. “I hope we can all go forward to the next version of Pediatric VIEW together.”
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Kelsey and Todd were enthusiastic participants during Seda’s appointment, taking turns holding her while they talked.
“We know she’s seeing something,” Todd said. “We don’t necessarily know what.”
Roman-Lantzy made conversation from 25 guiding interview questions:
What does Seda look at or respond to? (Shiny toys and an iPad game designed for CVI.)
How far away does she notice people? (They need to be close enough to almost touch her.)
How does she do with noisy, stimulating environments? (She loves listening to others talk but needs quiet to be able to concentrate on playing or therapies.)
Through all of this, Roman-Lantzy watched Seda “like a hawk.” Observation, combined with the interview and direct interaction, would take an hour and a half. She said later: “Not everybody perceives that I’m doing an assessment while I’m doing it … it’s meant to be pretty non-threatening.”
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Before Johnson of West Penn’s leadership delivered the news that the program would end, Roman-Lantzy said he tried to save the program. From February through April, Johnson attempted to find Pediatric VIEW space in another department, such as neurology, to no avail. According to Roman-Lantzy, she was told that the Allegheny Health Network only works with typical children given the proximity to the specialists at UPMC Children’s Hospital of Pittsburgh.
According to Roman-Lantzy, the hospital also had concerns about liability: What if a family came in and she gave them advice, and the advice didn’t work, and they sued the hospital?
As Roman-Lantzy told Kelsey and Todd during Seda’s appointment, “We don’t call ourselves vision therapists because therapists are people with a license that do specific things. We’re really vision educators.”
At home in Virginia, Seda had one session with an Early Intervention TVI, the only one available. “She gave us some tips and tricks and things like that,” Kelsey told Roman-Lantzy.
As she shifted to Seda’s direct assessment, Roman-Lantzy turned off the office lights. She lowered her voice. “OK, Seda, my name is Christine. You’ve been hearing me talk.” She told Seda she was going to adjust her legs, just as Kelsey and Todd told Seda each time they were about to move her.
She told Kelsey and Todd, “When I don’t talk, it’s for a reason.”
A flashlight beam of red (the easiest color to see; yellow is the next easiest, explaining children’s preference for Big Bird in a pre-Elmo world) and silence, except for occasional whispered cues to Seda, filled the area around the foursome. She tested to see if Seda closed her eyes defensively against light. She dangled a Slinky, then a squishy ball. Seda batted and grabbed at them. That, Roman-Lantzy said, meant that Seda was using her vision for function and that she would rather participate than just watch. “We have a lot to work with,” she said.
Roman-Lantzy turned the lights back on after 45 minutes. She marked a paper copy of the CVI Range and arrived at Seda’s score — within Phase II of three. “She’s well on her way.”
According to the Perkins School for the Blind, between 80 and 90% of learning is visually informed. What the Johnsons learned will inform Seda’s early intervention goals and, when she starts school, will dictate accommodations. The next step at home will be to modify her play environment to continue to connect sight and action.
“One of the most important things for Seda to learn is her own power,” Roman-Lantzy said. “There’s such a tendency to try to bring it to her, to do everything for her.”
She added, “One of the caveats is nobody can do this 24 hours a day. You’ve got a lot on your plate; she has a lot on her plate. But if you can find four or five times in the day” to focus on her vision, that would make a difference.
“Todd and I talked about it later, just how bizarre it was” to have a positive experience with a specialist, Kelsey said. “It was very encouraging to find out where she was based on us just guessing for a year.”
What concerned Kelsey was how little information about CVI they received from Seda’s medical providers. “It just seems like it falls to parents to do a ton of research, which we will do for our kids, [but] there’s also a certain amount of privilege to be able to do all that.”
Likewise, that dynamic is confounding to Roman-Lantzy. “Why is it that parents have to grovel for services for their child who’s visually impaired when their vision issue is impacting every other area of human development?”
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After Roman-Lantzy publicly announced West Penn’s decision to end their relationship with Pediatric VIEW, scores of parents from across the country wrote to Allegheny Health Network’s administration, expressing shock, sadness and disappointment. They wrote of the difference between their children’s initial assessments as toddlers and young children and what they’ve accomplished as older children and teenagers. Roman-Lantzy and her work had finally given them answers and hope.
The decision stood.
Roman-Lantzy learned the healthcare network and West Penn considered her Pediatric VIEW program an independent practice, which confused her, but was a designation that would allow her to keep over 20 years of patient files.
At the urging of Laneri, the neonatologist, she reconnected with The Children’s Home and Lemieux Family Center where she had been a developmental specialist early in her career. The site includes a 30-bed pediatric specialty hospital and Child’s Way, a daycare for medically fragile children.
Pediatric VIEW “really fits within the mission and vision of The Children’s Home,” said Pamela Keen, the organization’s CEO, who added that many of their patients have a CVI diagnosis or could benefit from an assessment.
Roman-Lantzy was taken by Keen’s enthusiasm.
“I’m as excited about this program as I was when we started Child’s Way in 1998,” Keen said.
The program will soon move there from West Penn.
“I am thrilled and finally have a sense of optimism,” Roman-Lantzy said. “I think The Children’s Home will celebrate this work and bring it into the light the children with CVI deserve.”
Update (8/19/2021): The Children’s Home and Lemieux Family Center announced today that it will be the new home for the Pediatric VIEW program.
Amy Whipple [she/her] is a Pittsburgh-based freelance writer and can be reached at amy.m.whipple@gmail.com or on Twitter @itsamywhipple.
This story was fact-checked by Xiaohan Liu.