> Sight restoring lenses
Young patients receive sight restoring lenses
Rosie Karon was only two weeks old when her mother noticed her left pupil was misshapen. When her parents, Shira Lipton, MD, and Adam Karon, JD, decided to have her examined by a pediatric ophthalmologist at a local hospital, the specialist referred Rosie to the Byers Eye Institute at Stanford where she was seen by Scott Lambert, MD, professor of ophthalmology and chief of ophthalmology at the Lucile Packard Children’s Hospital Stanford. Lambert diagnosed Rosie with a congenital cataract and persistent fetal vasculature (PFV).
These eye disorders are both rare, and while they affect a minority of children, the implications if not addressed can be lifelong.
Lambert and Surbhi Bansal, OD, clinical assistant professor of ophthalmology, recommended that Rosie undergo eye surgery and then be corrected optically with soft contact lenses. The surgery was successful, but the soft lenses caused corneal abrasions to Rosie’s eye, so they decided to transition her to rigid gas permeable (RGP) contact lenses.
Unparalleled care by Stanford doctors
Leaving Rosie’s left eye without an RGP lens was not an option, in fact, without one, Rosie was blind in her left eye. However, the RGP lens would often pop out on its own or get damaged, plus Rosie’s parents had to remove the RGP lens each night because Rosie could not sleep with it.
“There was about a 15-day stretch where we had to take Rosie to Byers for Dr. Lambert or Bansal to help remove the lens for us, because we couldn’t do it ourselves,” Lipton said. “Their care for our daughter was unparalleled. They would show up on weekends, holidays, and late at night to help us. We never expected that of them, and yet they remained committed to Rosie and her vision.”
Rosie will continue to wear the RGP lens in her left eye, but may opt for a permanent lens placement when she is older. For Rosie’s parents, any progress their daughter makes in terms of her vision is a victory, whether gaining her peripheral vision or reading letters on a visual acuity test.
Advancing change for other families
While RGP lenses are helpful, for some families, their high cost is not sustainable. If they break or a child outgrows them, they must be replaced. Often, however, insurance does not cover these expenses, deeming the lenses a cosmetic expense.
“When a family cannot afford these lenses and their health insurance will not cover them, it is the equivalent of telling an amputee that they cannot have a prosthesis,” Lambert said. “Children like Rosie need these lenses and are at risk of losing their vision entirely, which is why for years I’ve advocated bringing awareness to this disparity.”
Lipton and Karon are working on behalf of other children like Rosie by encouraging Congress to advance legislation to ensure these vision saving lenses are covered by insurance. Congresswoman Anna Eshoo and her senior health policy advisor have indicated they were unaware that contact lenses were not covered for infants after congenital cataract surgery and are vitally interested in addressing this need.
“Most recently Congresswoman Eshoo read a letter that I wrote about Rosie to the House and is hopeful that contact lenses can be covered under a bill currently before congress called the Ensuring Lasting Smiles Act,” Lipton said. “This bill highlights the need for all children with congenital anomalies to have full and adequate health care coverage, including necessary devices such as contact lenses.”
In the meantime, Lambert has set up a fund that allows donors to assist families who cannot afford contact lenses for their children after cataract surgery. To make donations for contact lenses, please use the link below and type “Pediatric Ophthalmology Support Fund” for Gift Designation: Donate to Lucile Packard Foundation for Children's Health.
“Our first priority is preserving and restoring vision, which is so important to the visual and social development of these children,” Lambert emphasizes.
By KATHRYN SILL
Kathryn Sill is a web and communications specialist for the Byers Eye Institute in the Department of Ophthalmology, at Stanford University School of Medicine. Email her at firstname.lastname@example.org.