Jocelyn Moore-Murray is only seven years old, but she’s had more surgeries than most people undergo in a lifetime — so many that her mom, Tiffany Moore, has all but lost count.
“She had her first surgery at three months old,” says Ms. Moore. A medical receptionist in the Neuroscience Department at Northwell Health for the past six years, she explains that Jocelyn was born with a condition called persistent hyperplastic primary vitreous, or PHPV, that has rendered her sightless in one eye — though it’s done nothing to dampen her spirit.
If you’ve never heard of PHPV, that’s not surprising, as the condition is relatively rare. In PHPV, the jelly-like substance behind the lens of the eye that is normally clear at birth instead remains hazy and riddled with scar tissue. That haziness disrupts light passing through to the back of the eye, blurring or completely obscuring vision. Over time, the scar tissue can become adhered or stuck to the back of the lens (the surface of the eye), or to the retina (the part of the eye that contains the cells that capture light). Children with PHPV are vulnerable to further eye problems, including cataracts, which is when the lens becomes progressively more clouded, or glaucoma, a condition that damages the optic nerve.
According to her mom, the goal of Jocelyn’s surgeries — undertaken to relieve pressure and remove scar tissue — was always to save Jocelyn’s eye. “There have been times we weren’t sure they could save the eye, but so far they have.”
Ms. Moore and her daughter have seen multiple specialists, at both Plainview and Syosset Hospitals, depending on what problem crops up. In a recent procedure, the prosthetic shield she wears over her eye for cosmetic purposes wasn’t fitting properly. “It caused a cyst to form,” says Ms. Moore, “so the shield had to come out and the cyst had to be removed.”
Jocelyn’s most recent procedure, at Syosset Hospital, was performed by Carolyn Shih, MD, director of refractive surgery in the Ophthalmology Department at Northwell. Dr. Shih is far from being Jocelyn’s first doctor — and she’s not even her first at Northwell. “I first met Jocelyn after she had already had multiple eye procedures, including a retinal detachment repair with silicone oil.” When Dr. Shih first examined Jocelyn, “Her eye was blind and painful, as her cornea, the eye’s ‘windshield,’ kept breaking down, causing abrasions and ulcerations.” Dr. Shih performed a conjunctival flap procedure, which stabilized the eye’s surface. “She can now wear a prosthesis that is beautifully matched to her other eye,” says Dr. Shih.
It’s not easy being a kid and having to undergo so many complicated surgeries, says Ms. Moore. “She’s a child, she gets scared, and she has trouble processing all that’s happening to her. But that’s why we love Dr. Shih.” The surgeon has been adept at comforting Jocelyn, even as she remains open and honest with her about what she’s doing and what may or may not work.
Both Jocelyn and her mom are pleased with the care they receive at Northwell. “I really like them all. They are all very nice to me,” says Jocelyn. “Even though what they do sometimes hurts, I know it’s not their fault.” The little girl calls Dr. Shih not just her doctor: “She’s my friend. She always explains to me what she’s going to do. She holds my hand and talks to me like she talks to my mom and dad about what is going on.”
For Ms. Moore’s part, watching her daughter endure surgery after surgery hasn’t been easy. “It was easier when she was a baby and I could hold her,” she says. And that’s where the Northwell staff steps in. “After this last procedure, I couldn’t get to the recovery room at the exact time she woke up,” says Ms. Moore, “and when I did get there, one of the nurses was cradling her just like I would have.”
“Over the last two years, Jocelyn has grown tremendously. She is a lovely young lady who has courageously persevered through these very difficult times and will do wonderfully as she continues on her path,” says Dr. Shih.