Rescuing Katies Vision | Overview
Patient's story spreads the word that cataracts aren't just for adults
Many people do not realize that a young child, even a newborn, can have cataracts, a condition more commonly associated with older people. Rob Baum knew because he had them back in 1966 when he was a toddler.
So when, at 2-and-a-half years old, his daughter Katie suddenly began holding her books close to her eyes and searching with her hands for food on her plate, he immediately suspected that the characteristic cloudiness of cataracts shrouded the lenses of her eyes.
Like father, like daughter
"Had I never had them myself at the exact same age, it would have never occurred to me that this could be a cataract," said Rob, who lives in Concord, Massachusetts. He also knew from experience that cataracts can lead to blindness in children if left alone and that Katie needed to be treated urgently.
As soon as he and his wife Sarah noticed Katie's unusual behavior, they brought her to her pediatrician, who couldn't see cataracts in either eye, but advised the family to see an ophthalmologist. Since it was three days after Christmas, they couldn't get an appointment.
Diagnosis at Boston Children's
"So we called Boston Children's Hospital," said Rob, "and the person who took the call said that it sounded like cataracts and advised us to come to the eye clinic the next day."
At the clinic, pediatric ophthalmologists diagnosed the condition. Katie, in fact, had cataracts in both eyes. The condition developed recently in the right eye, which led to the obvious vision problems. The cataract in the left eye probably developed months before, but it wasn't noticeable because she could still see well through the right eye.
"In retrospect, we realized that she was having a problem with the left eye because we had noticed that it appeared to wander at times," he said.
Plans for cataract surgery
Surgery to remove the left eye's faulty lens and replace it with a tiny plastic prescription lens, called an intraocular lens, was scheduled right away with Deborah K. VanderVeen, MD, who routinely performs cataract surgery and lens implantation in babies and children.
A second cataract surgery in the right eye was scheduled two weeks after the first. The expectation was that vision would return to the left eye right away. Katie's parents, however, were warned that there was a chance that vision could be delayed because that cataract had been undetected for months, during a critical time in development in which the brain was getting no visual experience from that eye.
The operation went very smoothly, but, unfortunately, vision did not return for four very difficult days, during which Katie was, for the first time, totally blind because the cataract in the right eye had become worse.
"This was a really rough period," said Rob. "The surgical result was perfect. The light was getting in. There was a clear pathway to the brain. But, we were told, when this happens, they have no idea how fast vision will return or how much vision will come back. We had hope because we were confident that the cataract hadn't been there from birth."
Vision returns, stronger than ever
Sure enough, before her second operation, Katie began to point out objects she saw, signaling to her parents that vision in that eye was returning. When she awoke from her second surgery on the right eye, she was seeing things she never noticed before.
"My wife, who has freckles, probably doesn't want this in print, but Katie said to her, 'Mommy, your face has sprinkles on it,'" said Rob. "It was a really happy moment."
The family was initially concerned that it would be difficult to keep Katie, an active toddler, from running and jumping, which they were expected to do for the next six to eight weeks. Also, each eye required protective glasses or a protective shield for about a month after surgery while the eyes healed.
They soon discovered that Katie had newfound interests in "calm" activities encouraged by Sarah, such as jigsaw puzzles, dolls, touch and feel books and others that she could interact with and focus on for the first time in months.
"My wife took two months off of work and put so much of herself into this period of time, creating activities for Katie. She deserves a lot of credit," said Rob.
A successful outcome
Now, several months later, Katie has no restrictions on her activities, and wears bifocals with purple frames that she picked out. Most children wear bifocals in the beginning because the intraocular lens prescription is aimed toward meeting their vision needs at a later age. Customized software used at Boston Children's enables pediatric ophthalmologists to model the growth of the eye and predict what the child will need in the future.
"It is just beautiful to see her running around," said Rob. "And after our experience in the operating room, where we saw what goes on with the number of highly specialized staff and the sophisticated pediatric equipment, we haven't stopped saying, "'Isn't it great that we are lucky enough to live near Boston Children's.'"