Sights Set on Better Care
For many, sight is a crucial part of perceiving the outside world. For Harrison (Harry) Panas, 18, who has severe autism and is nonverbal, sight is not only how he perceives the world, but how he feeds himself, and how he communicates with his family and caregivers.
“Sight is everything for Harry,” says Northwestern Medicine Ophthalmologist Safa Rahmani, MD. “He looks at you and holds your hand when you’re talking to him. It’s his mode of communication with the entire world.”
And Harry almost lost it.
When Harry was 15, he became self-injurious, frequently hitting himself in the head. An exam under anesthesia revealed a cloudiness in the lens of his left eye. Harry had severely detached his retina, and a cataract had formed over his lens. As a result of the detachment, Harry lost vision in his left eye. It was too late to save and surgically fix the eye.
A few months later, Harry experienced significant vision loss. He had detached his right retina. Local hospitals were unable to provide the post-operative care that Harry would need for the best outcome.
“I was shocked,” says Margaret Panas, Harry’s mom. “If Harry doesn’t have vision, he has nothing. I wasn’t going to let him lose it.”
That’s when Margaret and her husband Dean drove to Northwestern Memorial Hospital. It was a Monday morning, and they arrived 15 minutes before the eye clinic opened. They didn’t have an appointment, but they had Harry’s medical records, notes from his previous care and a fervent desire to advocate for their son. The practice manager said that she would get an answer for Margaret and Dean by Wednesday. The next day, Harry had a clinic visit set for the following week with Dr. Rahmani, a pediatric retinal specialist.
“We never thought for a second if we could do Harry’s surgery; we only focused on how we could do it,” says Dr. Rahmani. “We had to come up with a unique plan for Harry’s care because of his history of self-injurious behavior.”
Dr. Rahmani went in for the first surgery, a scleral buckle surgery, which is a less invasive way to reattach the retina because it’s done outside of the eye. After this surgery, it was clear that Harry would need a second, more invasive surgery that would require going inside of his eye to completely reattach his retina.
This was not a setback. “Even though the first surgery was unsuccessful, it ended up being necessary to get Harry used to staying in the hospital,” says Dr. Rahmani. “We learned a lot about how to provide him with the best care possible.”
Harry’s post-op recovery plan required much planning and collaboration among everyone on his care team.
After retinal reattachment surgery, it’s crucial that the eye stay in a certain position to heal. To achieve this, Dr. Rahmani and her team kept Harry sedated in the ICU with his eye held in one position for 48 hours.
The team worked hard to slowly get Harry used to physical restraints needed to prevent him from hitting himself. To help prevent further injury to the head, Harry was given a hockey mask with a full visor. He got used to the mask during his stays in the hospital and still wears it today to protect himself against further injury. Harry’s care team and his family also kept Harry occupied with visual activities to prevent attempts at self-injurious behavior.
Harry will likely need surgery again, but next time will be even easier. Harry has returned to school full time, and can dress and feed himself, watch TV, and interact with others again.
"He's happy. It's amazing," says Margaret. "I'm so grateful to find a place like Northwestern Medicine and hope to get the message out there that people with disabilities deserve better medical care.”