Deadly Cancer Hides in the Eye Retinoblastoma is a cancer that strikes children as late as age 5, though it may start even in the womb. It arises from the cells of the retina, the spot of nerves at the back of the eye that captures light and sends vision signals to the brain. Dr. Linn Murphree, director of ocular oncology at the Children’s Hospital Los Angeles’ Retinoblastoma Center, said the cancer is an exceedingly rare one, affecting only about 1 in 15,000 babies every year. “There are probably only 300 new cases a year in all of North America,” Murphree said. But while the disease is rare, it is also ruthless.

Worldwide, 87 percent of children stricken with retinoblastoma die. Survival is best in developed countries, but even among the children who have the disease in these nations, 97 percent suffer moderate to severe visual impairment as a result. “Most of these cases involve the removal of one eye at least,” Murphree noted. “Obviously, for young parents who face a diagnosis of a cancer in their child that is both life-threatening and vision-threatening is very difficult.

The other characteristic of the cancer that makes it so dangerous is the fact that it is very difficult to detect. Santos, like most other parents, had taken her baby girl to all of her recommended checkups, the most recent one at 9 months.

While the cancer was most likely present in Rowan’s eye at this time, even the pediatrician missed it. Murphree said the test that would best reveal whether or not a child indeed had retinoblastoma would involve dilating the eye with eye drops — a test that is not currently a standard practice among pediatricians. Years ago, Murphree spearheaded an effort to make these tests routine. But because the disease is so rare, most doctors remain opposed. “The problem is that pediatricians will see one case of retinoblastoma in 30 years of practice,” he said. “You would have to do [the test] in 15,000 healthy babies before you find it in one.”

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