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During her first year of life, Allie DeFrancisco's vision seemed perfect. But by the time she was 15 months old, she developed cataracts, a clouding of the eyes' lenses that affects less than one percent of all children.
The condition was difficult to detect, particularly because Allie was given a clean bill of health at her 12 month check-up, according to her parents Kristin and Rob.
The couple first noticed something was wrong when Allie began to grasp at air when she tried to reach for something.
"I would feed her a cracker and she'd reach toward the left or right of it," Kristin said. "At dinner she was trying to get her food but was missing it by a mile."
At first, the DeFranciscos' thought their daughter's recent bout with conjunctivitis was to blame. But the episodes were getting worse instead of better. In addition to not reacting to visual stimuli, Allie became more complacent, quiet, and acted as though she wasn't feeling well.
"I held a spoon directly in front of her and I could tell she couldn't see the spoon," said Kristin. "She wasn't paying attention to it at all. It was as if she didn't even know I was there."
When she brought Allie to her doctor, the problem continued to worsen.
"When I got Allie to the pediatrician, she walked right into the wall," said Kristin. "The doctor took a look at her eyes and noticed they were really cloudy -- almost as if someone had taken milk and poured it into them. Finally she said, 'I don't want to alarm you but I've never seen this before and you need to go to Boston Children's Hospital.' "
It was at Boston Children's where Allie was diagnosed and referred to Deborah K. VanderVeen, MD, a specialist in ophthalmology who routinely performs cataract surgery and lens implantation in babies and children.
Dr. VanderVeen explained that although surgery on a child as young as Allie is difficult, she wanted to operate as soon as possible -- removing the faulty lenses and replacing them with prescription lens implants. Delaying treatment, said Dr. VanderVeen, can mean permanent vision loss because the developing brain is deprived of images during a critical time when it is learning to see.
When the DeFranciscos sought a second opinion, ophthalmologists at Massachusetts Eye and Ear Infirmary in Boston confirmed the diagnosis and told them to go back to Children's for treatment.
"They told me that Allie was 90 percent blind, could only see shadow and shapes and that Dr. VanderVeen is on the cutting edge of treating cataracts in children and that we were absolutely in the right place," Kristin said.
Children's is one of the few places in the country where lens implantation in children as young as Allie is routinely performed. Due to the risk of inflammation and implant rejection that is common in children, the procedure requires highly specialized expertise, the right technology and state-of-the art pediatric equipment.
Kristin said throughout Allie's preoperative care, two separate operations on each eye, and the follow-up care, it was obvious to her that the hospital team specializes in dealing with children and families.
"They know their business," she said. "The staff goes beyond children and really treats the whole family. There was always someone to answer any questions we had. They had a staff person for every need you can think of and these people were just wonderful."
"For instance, here I am with a baby who can't see and they understood that I may not remember something on the day of surgery," said Kristin. "So they call me the night before to remind me and to make sure I bring a blanket, a pacifier or something that would comfort my child."
Dr. VanderVeen, Kristen said, has been accessible and available to answer questions that have come up over time and is "pretty much next to God in my eyes because she's enabled my daughter to see again."
Now, almost two years later, Allie's vision is 20/20 when she wears her bifocals, which she will continue to wear to strengthen her eyes. She's expected to always wear glasses, but the hope is that she won't need bifocals in the future. Her lens implants needn't be replaced because customized computer software was used to predict the growth of her eye, so that the lens will meet her vision needs now and into adulthood.
The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”