Claire Gibson 2016-12-06 11:05:52
A PLACE for KIDS The Tennessee Lions Eye Center skillfully and lovingly caters its care to children. At a Starbucks outside of Chattanooga, Tennessee, Abigail Bean, 10, sips a Vanilla frappe and shivers. Blonde and fair skinned, she’s wearing a navy cardigan and a pair of pink glasses. She’s both happy and freezing because she’s enjoying a sweet, icy drink. But when her shoulders finish quaking, her eyes keep moving. “I’ve had a million kids ask me, ‘Why do your eyes do that?’” she says, then shrugs. “I just tell them that’s how I am.” Abigail’s eyes move involuntarily as a result of nystagmus, a condition that affects fewer than one percent of the population, and in her case, the result of a rare recessive gene passed down from both sides of her family. Her mother, Amanda, noticed the eye movement when Abigail was just three months old and knew that something was wrong. “I planned on asking the pediatrist about it at her three-month checkup,” Amanda says. “But before I could even bring it up, he asked me when the eye movement had started.” When a visit to a local ophthalmologist proved unhelpful, Amanda wasn’t sure where to turn. That’s when her pediatrician recommended she take Abigail to see Dr. Sean Donahue at the Tennessee Lions Eye Center. Donahue performed a strabismus surgery to correct Abigail’s misaligned eyes when she was 2. He performed another surgery to remove the stitches, and since then, has continually provided regular checkups and care for Abigail every few months. “It was stressful,” says Amanda, remembering the long drives up I-24 with her young daughter. “But Dr. Donahue put us at ease right off the bat. He gave us a diagnosis—ocular albinism and congenital nystagmus. He told us it can’t be corrected with glasses. But he said, ‘We can give her the best vision possible.’” Abigail and her family experienced firsthand exactly why the Tennessee Lions have chosen to invest their time and their money in pediatric ophthalmology. For years, the clubs had been active, providing glasses and surgeries for adults in need. But in 1995, the former head of Vanderbilt’s ophthalmology program, Dr. Dennis O’Day, challenged the state’s clubs to brainstorm how they might help care for children. Emboldened by his request, the Lions mobilized, raising $4 million for the construction of a state-of-the-art pediatric ophthalmology clinic, as well as an endowment to sustain the clinic for years to come. Located in the district surrounding Vanderbilt University, the Tennessee Lions Eye Center is as inviting today as it was when it opened in 1997. Valet parking is complimentary for patients and families, eliminating the hassle of navigating the hospital parking garages. In the waiting room, big-screen televisions enable children with low vision to watch from a normal distance. Toys and books occupy waiting patients and their siblings. A dark room provides quiet and peace for infants with sensitive eyes. Large murals of zoo animals like tigers and pandas line the walls. In every treatment room, an electronic stuffed animal rests on a shelf, waiting for a doctor to press a pedal near the patient’s chair that activates its movement. For a child, a stuffed cow waving his tail back and forth is a much better vision test than an eye chart. It’s a place any child would feel at home. But it’s also a place where children receive excellent treatment from some of the best eye doctors in the nation. With seven pediatric ophthalmologists on staff, the Tennessee Lions Eye Center accommodates more than 25,000 pediatric visits every year. And since it is the only clinic in 200 miles that operates on children, many of those visitors come from throughout the Southeast. Donahue, chief of Pediatric Ophthalmology at Vanderbilt, has seen firsthand just how transformative that treatment has been for children in the region. “For years, most kids were seen for regular care by adult ophthalmologists,” he says. “But kids are not little adults. Many of them are too young to read the eye chart, and even if they know that they have a problem, many of them won’t tell you.” Tall, with grey hair and sharp features, the 54-yearold doctor grew up in rural Wisconsin, where his father was the town’s only physician. He remembers running into his father’s patients in the grocery store, at school— on every corner. “I couldn’t act out at all,” he laughs. While medicine eventually called him into the fold, his early education focused on neuroscience, studying problems with the developing brain. In the following years, Donahue began to draw connections between his study of the brain and the vision system. That connection led him to ophthalmology, and ultimately, to Vanderbilt. Coincidentally, Donahue arrived in Nashville the weekend of the pivotal Lions state convention in 1995 where O’Day challenged the audience to make a commitment to caring for children. While the Lions fundraised, Donahue treated complex patients like Abigail Bean, and began experimenting with new technology to help identify a far more common pediatric problem: amblyopia. Donahue is one of seven pediatric ophthalmologists on staff. “Amblyopia is actually a problem with the brain,” Donahue explains, leaning on his neuroscience background. If left untreated, specifically during the years of visual development between birth and 6 years of age, amblyopia can result in a permanent defect that leaves a person with only one functioning eye. But unfortunately, children can compensate with their strong eye, giving few cues for parents to pick up on that something is wrong. And worse still, children under the age of 6 can’t easily complete eye exams—after all, how do you read an eye chart if you haven’t learned your ABCs? Around the time Donahue arrived at Vanderbilt, a new technology had emerged. The MTI camera used digital photography to identify children with amblyopia. If you Google “amblyopia screen test,” you can see how the camera works. With a single black-and-white photo, pediatric ophthalmologists can look for asymmetry in red-eye reflexes. That’s right—it turns out those red-stares you used to get in old photos are medically significant. With this new technology, pediatric ophthalmologists could diagnose the most common, treatable vision impairment among children without the need for them to read an eye chart. Simple and useful, the camera had the potential to revolutionize pediatric ophthalmology by identifying patients far sooner than ever before. As one of the few Ph.D.s in his medical field, Donahue was uniquely poised to develop a screening system to identify these patients. There was only one problem. “We knew that if we could treat more children before age 7, they could be saved from a life of poor vision,” says Lynn Wilhoite, executive director for the Tennessee Lions. “But children of that age aren’t in school. They’re not in organized groups. So with [Vanderbilt], we trained volunteers to go out and do the screenings wherever we could find the children.” Donahue had access to this new research and technology. Wilhoite had a crew of willing and eager volunteers. Together, they began a pilot program called Kids Sight, hoping that with their strengths combined, more children would get the treatment they needed before it was too late. A veteran who spent more than 34 years in the U.S. Army, Wilhoite had served as an engineer, building hospitals overseas to treat the troops. To him, building the Lions Eye Center and creating a massive state-wide screening program was just an extension of that service. But these were untested waters, and many in the medical field were wary of sending retirees out to do what was essentially medical research. ‘We knew that if we could treat more children before age 7, they could be saved from a life of poor vision.’ Undeterred, the Lions and Vanderbilt established a plan. Volunteers would take MTI photos of children wherever they could be found and send the photos back to the Lions Eye Center for interpretation. Any child flagged for potential amblyopia would be contacted and referred to a pediatric ophthalmologist in their local area. All the while, the Lions and Vanderbilt would keep data about how the program was working. To say the program was successful would be an understatement. Over the last 20 years, the Lions have screened more than 500,000 children in Tennessee, and of those, approximately five percent have been referred for further care. The data from this research has been so convincing that 14 Lions programs across the country have modeled their screening initiatives after Kids Sight. And this year the American Academy of Pediatrics asked Donahue to pen the group’s newest recommendations: encouraging MTI camera vision screening for every child under the age of four. “That’s all happened because of what we started here with the Lions Club,” Donahue says. “Screening and treatment of amblyopia is one of the most cost effective treatments in all that we do in medicine, not just ophthalmology, but all of medicine.” The Tennessee Lions Eye Center handles more than 25,000 pediatric visits annually. Year after year, Tennessee Lions continue to undergird their Kids for Sight program. They typically contribute $200,000 annually for updating instruments and other costs. Of course, not every child that comes to the Tennessee Lions Eye Center has a condition as treatable as amblyopia. Lauren Fields was born with optic atrophy, a condition that can’t be corrected surgically or with glasses. Though she has trouble seeing things at a far distance and reading up close, her impairment hasn’t stopped her from excelling on the basketball court. A senior in high school, Fields is busy in competitive AAU tournaments and with her school team—and plans to play basketball in college. Through the Tennessee Lions Eye Center, Fields has had access to PAVE, a program that has helped pay for some of the costs associated with her treatment. In 2016, a PAVE counselor encouraged her to take a field test to see if she could qualify for the bioptic glasses she would need to legally drive. Minutes after completing the test, the doctor revealed the results: Fields passed. “I had some doubts,” Fields says about the day she took the test. “But I was so excited. I was right before the cut off.” Fields is several years ahead of Abigail Bean in the process of learning to live with low vision. And for all of the surgeries, appointments and road trips to Nashville, Abigail knows her future will still include low vision. But it doesn’t slow her down. At school, she uses iPads, a mini acrobat camera and other equipment to help her see. In her free time, she’s a competitive gymnast—“ level three,” she says happily. The judges don’t know of her condition, and though it makes for a more difficult time on the beam, Abigail shines on the floor and uneven bars. After losing a pair of glasses that went flying across the gym after a roundoff back-handspring, Abigail began wearing sports glasses with a strap that tightens around her head. With the sports glasses, she says, “If I land on my face, they don’t hurt as much. And I fall a lot.” With the help of an orientation and mobility coach, Abigail is learning to walk with a cane. “I don’t do very well in dark places or in crowds,” she says. “But if there is a dip or a hole, I can know because [the cane] goes before me.” Of course, a cane isn’t the only thing that’s gone before Abigail. Donahue accumulated countless years of education, training and compassion to be ready to care for her eyes. He’s gone before her. Thousands of Tennessee Lions, fundraising and creating a place for her to receive treatment, have gone before her. Lauren Fields, with her youthful persistence, hope and drive, is going before her, paving the way. And Abigail herself is happy to be a guide as well. Until this year, she was the only visually impaired student at her school. “She’s in kindergarten,” Abigail says of her new friend. “I’ve been mentoring her.” When asked what it feels like to be a mentor, Abigail finishes the last of her frappe, smiles, and sums it up with one word: joyful. Extra Digital Content Lions throughout the nation preserve children’s vision through screenings. Read the story from the February 2012 LION. An Eye Center With Compassion When my son Jack was about six months old, my parents visited us in Manhattan, and for dinner we trooped out to a nearby chophouse. As we sat at a comically long table, my dad waved at Jack, seated at the far end. Seeing this blur of movement, Jack smiled and leaned his head far back, looking over the bridge of his nose down the table at my father. At first, we all thought this was some form of baby fun. Perhaps it was gas. But then Jack kept doing it, and my wife and I noticed that his eyes seemed to cross in a more systematic way than just the googly-eyed look that young children have. Within a few days, we took Jack to the pediatrician and our vague concerns sharpened into focus. His eyes were crossing—strabismus. He also had a bad case of nearsightedness. The good news was that surgery wouldn’t be necessary. The immediate challenge would be to wrestle this otherwise cuddly, curly-headed toddler into a pair of heavy, thick glasses. A couple years later, we moved to Nashville, settling near Vanderbilt University. Having both gone to school there, my wife and I had passed by the Lions Eye Center numerous times, but never bothered to learn about it. Now it became a vital resource for us. We marveled at how the doctors there could discern anything about Jack’s condition by having him watch a clapping monkey at about the same distance as that long table in New York and how seamlessly they continued his treatment following our move. We met Dr. Lori Ann Kehler, who has not only become a family friend but also has cared for Jack with the same compassion she would for her own children. Jack, now 12, has recently passed some important milestones. He took it upon himself to get fitted for contacts, and he has finally overcome the mighty tween struggle of putting them in and taking them out, cleaning them, and most importantly, not falling asleep in them. Perhaps more importantly, we discovered at Jack’s last visit that his eyes have nearly stopped crossing and that within a couple years the crossing could be gone altogether. Want to learn more about children's vision screening efforts in the U.S.? Check out Lions KidSight USA today. Ryan Underwood is editor of Vanderbilt Magazine.
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