Expectant mother Stacey Zellers was watching the Today Show one morning in June 2005 when she saw President Jimmy Carter and Scott Jens, O.D., talking about infant eye health and the new InfantSEE™ program that provided assessments at no charge.
As a typical first-time mom, Stacey thought this was something else she now had to worry about.
She mentioned the InfantSEE™ program to her own mother, who thought she was going overboard and responded with an unsure sense of how infant eyes would be assessed because a baby would be unable to read an eye chart.
Nonetheless, Stacey, a first-grade teacher, visited the InfantSEE™ Web site (http://www.infantsee.org/) and learned about the public health program designed to ensure that eye and vision care become an integral part of infant wellness care.
Five months later, Stacey gave birth to a seemingly healthy baby girl, Gracie, who showed no signs of health problems.
Gracie’s well-child exams at the pediatrician’s office gave no indication that anything was amiss. She was entirely normal in terms of visual activities and appearance and never had any unusual red-reflexes in photographs.
When Gracie was 7 months old, Stacey began her summer break from school and decided it was time to schedule an InfantSEE™ assessment.
“As this was my first baby, I was reading all the books and talking to my friends about everything, and it was almost like, why haven’t I heard about this?” Stacey said about the program. “A large part of it, I have to admit, is that it’s free. So I thought, ‘what do I have to lose?’”
Stacey used the AOA Dr. Locator feature on the InfantSEE™ Web site and entered her ZIP code in Chandler, AZ, to find Paul Wagner, O.D., a nearby InfantSEE™ provider.
“When I put in my ZIP code, I was amazed at how many doctors were doing this nearby for free,” Stacey said. And after reading about the assessments on the Web site, Stacey felt she was prepared for the visit.
“I wanted, and expected, someone to evaluate the health of her eyes,” said Stacey. “I wanted to know what her vision looked like at this point. My husband has poor eyesight, and I wondered if it was hereditary. I thought there would be no problem, really. Her tracking was normal. I expected someone comfortable with an infant, and I thought it would be almost entertaining for her.”
Stacey took Gracie to Dr. Wagner for the appointment in June 2006, nearly a year after seeing President Carter on the Today Show, and everything looked perfect right up until the eye health evaluation.
“With the dilation, some parents are weary, but it was no problem,” said Stacey. “She didn’t love the drops, but it was over so fast.”
Unfortunately, Dr. Wagner noticed something behind Gracie’s left eye. At that time, he did not provide a diagnosis. Instead, he referred her to a pediatric ophthalmologist for further evaluation.
“At that point, I was not too concerned because the pediatrician hadn’t seen anything at her 6-month appointment,” said Stacey.
However, Gracie was soon diagnosed with retinoblastoma, a rare tumor in the eye.
The cancer seemed to be localized in the left eye, which was then enucleated in mid-July 2006.
“When I say that InfantSEE™ saved her life, it really did,” said Stacey. “I don’t know when we would have caught it otherwise. I’m sure we would have, but it could have metastasized by then.”
Gracie is recovering and adjusting well, though she is clingy and now shows a fear of doctors.
“She is very resilient and strong,” said Stacey. “Unlike others, she had good vision in that eye. So she is now adjusting to some vision being blocked.”
“If I hadn’t seen the Today Show, I don’t want to think about how much different it would be for us,” said Stacey. “Gracie is a rare case, but it saved her life. If caught early on—amblyopia, nearsightedness, farsightedness, whatever—it’s so much better. Why not do it for the health of the child?”
Stacey also emphasized the importance of dilation during the assessment.
“I can’t imagine going and not having that piece done,” said Stacey. “I know there are things they can’t see without it. It’s just a couple extra minutes, but it’s so important.”
Stacey, along with her mother, is now a strong advocate of the InfantSEE™ program, speaking to mothers’ groups, friends, and anyone who will listen.
“I tell everyone—‘do this for Grace. Make your appointment.’”
