Armon and Aaron Raynor were just 5 months old when they were diagnosed at the Wilmer Eye Institute with an exceptionally rare form of glaucoma. Since that day in February 2019, parents Robyn and Chris Raynor have been fully participating members of their boys’ medical care team, regularly driving two-and-a-half hours from their home on Maryland’s Eastern Shore for countless exams and more than a dozen surgeries.
Glaucoma is a condition in which the optic nerve is damaged, usually by abnormally high fluid pressure in the eye. The Raynors faithfully administer the eyedrops and other medications used to control that pressure three times a day. They also raised money to purchase and use an instrument called a tonometer to regularly check the twins’ eye pressure themselves. And they provide a constant stream of data to the boys’ doctors — Wilmer pediatric ophthalmologists Jefferson Doyle, M.D., Ph.D., and Courtney Kraus, M.D.
“Glaucoma is one of the toughest conditions we deal with in pediatric ophthalmology, but you can have a markedly different outcome when you have a good care team, including multiple doctors and very, very importantly, [involved] parents,” says Kraus, whose glaucoma research includes studying ways to optimize care for this condition. “Dr. Doyle and I enjoy working together, and the Raynors are just amazing.”
Closely monitoring eye pressure at home, which has only recently become possible with the creation of the accurate, portable and relatively affordable iCare tonometer, can be of great benefit to glaucoma patients. And it’s especially helpful for small children, who usually have to have the exam done under anesthesia in an operating room.
“We don’t want to put them to sleep every three months to check their pressure if we can avoid it,” says Kraus. “At home, they feel safe, they get used to it and it can be done much more frequently.”
Because eye pressure changes constantly, even in a single day, frequent exams provide a way to catch spikes early, perhaps even to determine which activities or situations contribute to those spikes, and intervene quickly to prevent damage.
Though not everyone is comfortable learning to use the instrument on themselves or their children, the Raynors are a formidable team. Robyn, who is an ER nurse, maintains a spreadsheet and is in constant communication by text with Kraus and Doyle. Chris, who is an EMT with a private ambulance company, usually does the weekly eye pressure check, bribing the boys with a chance to play with his smartphone while they sit for the exam. Now 3 years old, the boys sometimes even ask for the exam so they can play with the phone. “And doing the drops has become more manageable because they don’t squirm,” says Robyn.
The boys were first diagnosed and treated by Doyle, who brought in Kraus because they often consult on pediatric glaucoma cases and because she specializes in a surgical procedure that creates a new pathway for fluid to drain from the eye.
In addition to being a pediatric ophthalmologist, Doyle is also a genetics researcher who in early 2020 launched the Wilmer Eye Institute Genetic Eye Disease Center with his colleague Mandeep Singh, M.D., Ph.D., a retina specialist. Doyle, from the beginning, has been interested in the Raynors’ genetic history, a puzzle he hopes he and his genetics colleagues might eventually unravel. The hope is that isolating a causal gene — and they have already identified a suspect gene in Armon, the more affected of the twins — will not only provide a clearer diagnosis and prognosis for the boys but might also eventually lead to a novel therapy to treat them.
The Raynors have all had genetics counseling and testing, and Robyn says the research gives her a certain amount of hope. “Even if it’s not in time for the boys, it might help future children with their characteristics,” she says. But she is also realistic. Both boys are already in an early intervention program sponsored by their school district to help them learn skills to cope with vision loss, including preparations for learning Braille and practicing navigation techniques, like how to walk with a cane. “I am determined that they will be as independent as possible,” she says.
Raynor says she is very lucky that she and her husband work so well together, but they both work full time, their lives are stressful and they sometimes feel isolated. They can’t leave the twins and their older brother, Emory, with family or babysitters because no one else is comfortable learning to check their eye pressure and, more important, to religiously administer those drops.
“That’s why Dr. Kraus and Dr. Doyle are such an incredible blessing,” she says. “They are so caring. You can tell it’s not just a job for them. They are devoted to their patients, and they are my biggest supporters,” she says. “I always have so many questions, and sometimes I worry about bothering them, but any time I text them with a problem or question, I hear back right away. Dr. Doyle has even rearranged his schedule to see us and to participate in surgery with Dr. Kraus. And if I don’t text them for a week or so, they will text me. ‘How are you doing? What’s going on?’ And they are incredibly respectful of my opinion. ‘You are with Armon and Aaron all the time. What do you think?’ They’ve included us in every decision they’ve made about the boys’ care, and I honestly don’t know what I would do without them.”