“If we didn’t do this operation, he goes blind”

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Little Bryce Murphy works the exam room like a pro – greeting everyone who comes in with a bright “hi” and sometimes a high five, then closing the door behind them.

Bryce is big on closing doors, his mom says with a laugh. And he’s big on bananas. The family goes nowhere without a banana for Bryce, she says as she pulls one out of her purse.

The almost 3-year-old pitches around the room like a “drunken sailor,” Michelle Murphy says, though she’s hoping that with some new orthopedic shoes, he’ll be a little steadier on his feet.

But he’s a happy boy, “a social butterfly,” says his dad, Dylan Murphy.

Riley Hospital for Children is almost a home away from home for the toddler, who has had 13 surgeries since he was born in September 2021 with multiple birth defects, and he sees no fewer than a dozen specialists.

The Murphys are at Riley this time for a follow-up visit with ophthalmologist Dr. Charline Boente and plastic surgeon Dr. Gregory Borschel.

The two collaborated on a rare surgery in May designed to save Bryce’s eyesight.

Called corneal neurotization, it’s a procedure Dr. Borschel helped pioneer when he worked in Toronto, involving transplanting a nerve from the back of the leg to the eye to restore feeling to the cornea.

Neurotrophic keratopathy is the condition the surgery is designed to correct. NK occurs when nerves that are supposed to protect the cornea are absent or damaged, meaning patients can suffer injuries to the clear part of the eye from something as small as a speck of dust, resulting in ulcers and scars that can lead to blindness.

Bryce bears two little scars on the back of his leg, where Dr. Borschel removed the nerves to transplant into the boy’s eyes. It’s an “expendable” nerve in the leg that does not interfere with movement, the surgeon said, but it can do wonders for the eye.

Dr. Borschel estimates he’s done about 150 of the procedures in the past 13 years, a couple dozen of those at Riley since he joined the hospital team as chief of plastic surgery in 2020. Patients come from all over for the surgery – one from as far as New Zealand.

“The cornea – the outer part of the eye – is the most sensitive part of the human body,” Dr. Borschel said. “For Bryce and others like him, the problem with this condition is they can’t feel the surface of the eye, so they can’t really protect it. Everybody’s had that experience where you have a little piece of sand or something in your eye. It’s just a tiny speck that you can’t even see, but you know it’s there.”

Most people – kids and adults alike – immediately work to remove the offending speck, but for someone who can’t feel it, the result often is a scratch followed by scarring. Eventually, no light can pass through, and the patient loses vision.

It can be difficult for a parent to know something is wrong early on because it’s more about the absence of something rather than the presence of pain or irritation. One scenario is a child not fussing as expected when water or shampoo gets in his eyes during a bath. In Bryce’s case, Michelle knew something was off when she saw her son sticking his finger in one eye, moving it under the eyelid.

They had already been seeing Dr. Boente since Bryce was born because his left eye was so much smaller than the right and he had a dermoid cyst on the eye. But this was different.

Early treatment for neurotrophic keratopathy is crucial to preventing blindness, Dr. Borschel said.

“It’s like a time bomb for the eyes,” the surgeon says bluntly. “If we didn’t do this operation, he goes blind.”

After the nerve transplant surgery, doctors sewed Bryce’s eyes shut for a few days to give the incisions time to heal.

It didn’t slow Bryce down, his parents said. He was up the next day playing and riding in a toy car in the hospital. Since then, he has continued recovering well, but it will take a few more months to know how successful the surgery was.

During a recent outpatient visit, Dr. Boente used a small instrument with the tiniest hair on the end to tickle Bryce’s eye and see if he reacted. His parents distracted him with books during the exam, but Bryce squirmed and squealed.

“He has some protection in there,” Dr. Boente said, “but it’s too soon to tell if it is more than baseline.”

Bryce cries when the doctor puts drops in his eyes, but at this point it’s likely not from the sensation so much as the fact that he is being restrained, she suggested.

Time will tell how well Bryce responds to the surgery, but his doctors and parents are naturally hopeful.

“Before this, there hasn’t really been a good solution in the ophthalmology world,” Dr. Borschel said, other than to attempt to slow the progression of the condition.

“This operation is designed to correct the underlying problem, which is the lack of nerves in the cornea,” he said. “We do that, and it takes a few months for it to start to kick in. With little kids, they’ll let the ophthalmologist do whatever – poke them in the eye literally, to examine them, but when they start to squirm, we know it worked.”

Unfortunately, often by the time patients get to Dr. Borschel, it is too late. Too much scarring has already occurred. That’s why he wants more pediatricians and eye doctors to know about the condition and the corrective surgery.

“Once it’s diagnosed, the sooner it’s dealt with, the better,” he said. “Getting the word out is so important for these families.”

One bright spot, he added, is that even if scarring has occurred, the procedure can still be done and the patient could be eligible for a cornea transplant.

Previous stories:

Bryce's courageous battle with multiple birth defects at Riley Children’s Health - This little guy has multiple birth defects, including a serious heart condition, but he also has a big fan club at Riley.

“Bryce is like a new kid since his heart surgery” - When Dr. Mark Turrentine finished the baby’s complicated heart repair, he delivered good news to the anxious parents: “He said it couldn’t have gone any better, and I just fell to the floor and cried.”