Author: Mary-Russell Roberson
Sharon Freedman, MD, professor of ophthalmology, and the Smale family of Seattle, Washington, have developed a supportive partnership. Sarah Rose Smale, 22, has been a patient of Freedman’s for almost 20 years. During that time, Freedman has helped the family preserve as much of Sarah Rose’s sight as possible and has guided them through multiple chronic and acute eye conditions, often from afar.
Sarah Rose was born blind in her left eye and with a cataract in her right eye, which was removed in order for her to be able to develop some vision. About three years later, Sarah Rose developed a glaucoma specific to infants and children, called glaucoma following cataract surgery.
As soon as Sarah Rose was diagnosed with glaucoma, her parents, Angela and Leonard, set out to find a pediatric glaucoma specialist. They sought someone on the cutting edge of pediatric glaucoma research and practice, willing to measure Sarah Rose’s eye pressure in-clinic in addition to during examinations under general anesthesia, and young enough to manage Sarah Rose’s vision care throughout her childhood. “We wanted the absolute best-match physician,” Angela said, “and we decided Dr. Freedman was that person.”
Sarah Rose was three years old the first time the family flew from Seattle to Duke. “Dr. Freedman explained Sarah Rose’s complex eye conditions, her proposed treatment plan, and the potential risks,” Angela said. “We really connected with her and were very much partners in Sarah Rose’s care after that first meeting.”
Angela and Leonard were impressed with Freedman’s ophthalmic expertise and the way she built a deep, trusting relationship with Sarah Rose through many surgeries and examinations under anesthesia. “You might expect her to experience medical trauma from all these surgeries, procedures, and eye drop medications,” Angela said, “but Dr. Freedman made it such that Sarah Rose actually almost looked forward to her appointments. We used to refer to anesthesia as a ‘hospital nap,’ which helped to build up her resilience.”
Parents on the Care Team
In patients with glaucoma, high eye pressures can damage the optic nerve. Angela and Leonard learned how to measure Sarah Rose’s eye pressure at home with an instrument called a Tono-pen. “It was difficult to use at first,” Leonard said. “But we started learning how to use it and sending data back to Dr. Freedman.” That data helped Freedman know when it was time to have Sarah Rose come to Duke for glaucoma surgery. After the surgeries, the data helped Freedman and the Smales adjust Sarah Rose’s medicine as her eye pressure changed.
Later, the family switched to a newer instrument, called an iCare rebound tonometer, which was easier and safer because it did not require numbing the surface of the cornea with anesthetic drops before use.
As she grew older, Sarah Rose realized how significant it was that her parents measured her eye pressures at home. “It helped save a lot of my vision,” she said. “And I really wanted other children with glaucoma to have access to that same level of care.” In 2014, she and her parents started a charity called Saving Kids’ Sight to educate and support other families. With Freedman’s help, Saving Kids’ Sight created a lending library of home tonometry units and provided Freedman with a grant to research the effectiveness of home tonometry in children with glaucoma.
Today, Sarah Rose’s glaucoma is under control, but she has developed significant swelling (edema) in her cornea over the past few years, and she is now legally blind. Freedman is still following her, connecting her with other experts at Duke Eye Center as her needs change. “I really appreciate how she’s shown so much compassion for me and my family,” Sarah Rose said.
Sarah Rose is a student at Stanford University, where she is earning both a bachelor’s degree in symbolic systems with a concentration in neurosciences and a master’s degree in computer science. For her honors thesis, she’s studying patient and physician attitudes toward home tonometry. Freedman is advising her. “She helped me narrow down my initial project proposal, is an integral part of the project, and is readily available to mentor me throughout the process. Any time I have a question or need feedback, she’s just an email away,” Sarah Rose said.
Giving Back
Over the years, Angela and Leonard have given several gifts to fund specific projects of Freedman’s and they have served on the Duke Eye Center Leadership Council. Angela is currently the chairperson. But they wanted to do more.
After consulting with Freedman, they decided to donate $500,000 to fund a research coordinator position and associated research project costs for five years. In the past, Freedman had to scramble each year to secure funding for this position, typically filled by someone between medical school and ophthalmology residency.
Freedman’s research aims to improve pediatric ophthalmology through new technologies, from home tonometry to optical coherence tomography (OCT) to virtual reality for visual field testing. “My goal is to apply emerging technology to helping children,” Freedman said. “Often children are left behind because they have special testing needs and do not make up a large part of the glaucoma market. But they are pretty important and the Smales have always shared my passion for this mission.”
Freedman pointed out that the Smale family gift will have benefits beyond her own research. “By choosing to support the research coordinator position, the Smales will be facilitating the entire clinical research endeavor of the Duke Pediatric Ophthalmology Division,” she said. “It’s a transformative gift.”