Grace Zellers is a bright, spunky 20-month-old girl who likes to have her parents’ undivided attention. When I met Grace and her parents in their Chandler home, the toddler had finished a snack and was signing and saying the words “all done” while I talked with her parents. When she realized they were not going to be distracted, she crossed the room to check me out. She studied me with her pretty dark eyes and smiled up at me, saying, “Hi, hi, hi.” As I watched Grace’s picture perfect little face, I never would have guessed that one of those beautiful, dark eyes was a prosthetic.
After battling cancer in Grace’s little body and prevailing against it, her parents, Stacey and Damian, are just grateful that one lost eye is the extent of the damage. It could have been much worse if Stacey, then five months pregnant with Grace, hadn’t seen a Today Show segment about the InfantSEE program. This nationwide program, created by the American Optometric Association (AOA) and Johnson & Johnson’s Vision Care Inc., provides free eye assessments for infants between the ages of six months and one year.
Friends and family members thought the idea of vision checks for infants was silly. But Stacey felt that she had nothing to lose. So when Grace was 7 months old, she visited the InfantSEE website, typed her zip code into the doctor locator field and found Chandler optometrist Paul Wagner, O.D.
“It was a really thorough assessment; they do all these things with lights and lenses,” Stacey remembers. “In the first part of the exam, the doctor said everything looked great. It’s really fun for the kids; they follow lights and stuff. Then he dilated her eyes, and obviously she didn’t like that, but he came back in and looked and he said that there was something there. There was a mass.”
Wagner had joined the InfantSEE program when it was new and the local AOA chapter was recruiting doctors. “I used to work with pediatric ophthalmologists and am used to working with babies, so I signed up,” recalls Wagner. “But I didn’t see any babies for a year until Grace came in. At first, everything looked good. But when I dilated her eyes, she had a big white spot on back of her eye. It should be red.” He told Stacey that it was most likely a developmental abnormality but could also be the sign of a rare type of cancer.
The Zellers family was referred to specialist after specialist. Eventually they learned that Grace had retinoblastoma, or cancer in her eye. The cancer was contained inside the left eye but the couple was left with a painful decision. They could put Grace through chemotherapy, hoping to save the eye but risking their baby’s health, or they could opt for enucliation, or removal of the eye.
“We met other families through Retinoblastoma of Arizona (RBAZ) and saw that some had gone through years of treatment only to end up taking the eye anyway,” says Stacey. Tests showed that the cancer was starting to break into smaller pieces and could possibly spread elsewhere, so the Zellers family chose enucliation. “It was a very hard decision,” Stacey says, “but Damian kept saying ‘We’re taking the cancer out, we’re not taking her eye out. We’re taking the cancer out.’”
One year after Grace’s surgery, she is not quite out of the woods, but her chances of complete recovery get better every day. “By the age of 2½, the risk of the cancer coming back goes way down,” notes Stacey.
Though retinoblastoma is rare, it is listed among the seven most common pediatric cancers. The Zellers family lives within 10 miles of three other retinoblastoma victims. Eighty percent of the time, the disease is discovered by a friend or family member who notices white in the baby’s eye.
It is critical to catch the disease as soon as possible. That’s where the InfantSEE program comes in. “The doctors said that the cancer would definitely have showed up at her 9-month checkup but it would have been much bigger and probably [would already] have spread to her brain or bones,” says Stacey, who has become an unofficial spokesperson for the program. “The exam is quick. It’s free. Parents almost don’t have an excuse not to do it.”
The InfantSEE exam looks for more than cancer. It can detect early signs of near-sightedness, far-sightedness, astigmatism, lazy eye (amblyiopia), cross-eye (strabismus) and glaucoma. Wagner says it is critical to treat vision problems before preschool so that a child’s vision can develop properly. “It’s like anything else that babies do. There is a developmental window,” he says.
InfantSEE reports that one in 20 infants assessed through the program is determined to be at risk for “abnormal prescription status” and that one in 14 infants examined required follow up, treatment or referral to a specialist.
“Bring them in. Take advantage of it,” Wagner recommends. “Pediatricians do a great job but aren’t as specialized. It’s a good idea to get a specialized evaluation and that’s what we provide.”
