Parents Forum

Sirk · 08-28-2008, 11:45 AM

Woman spots baby’s eye cancer online
U.K. mom saw tumor that doctors missed: ‘Anybody would have done it’

Quote:

It wasn’t easy for Madeleine Robb to send an e-mail to another mom warning that her baby might have a deadly form of eye cancer. But she’s glad she did it — and so is the mother of 1-year-old Rowan Santos.

“I didn’t want to scare her,” Robb told TODAY co-host Meredith Vieira from London on Thursday. “But then I weighed out the options. If something wasn’t wrong, then no real harm was done. If something was wrong, I really had no option, so obviously I had to tell her.”

Just hours after reading the e-mail, Megan Santos of Riverview, Fla., learned from a doctor that Rowan has a potentially deadly form of childhood cancer called retinoblastoma.

Although Rowan will, unfortunately, lose her left eye, Megan Santos has called Robb, who hails from England, a “hero,” because the online diagnosis may have saved her baby’s life.

The two moms, who each gave birth to a daughter on the same day, spoke for the first time on the phone on Wednesday. But it was a newer form of communication, the Internet, that provided the vital information and the lifesaving link.

Crucial correspondence
Santos and Robb first met online through chat on a pregnancy Web site, BabyFit.com, when they were both expecting. Their respective daughters, Rowan Santos and Lileth Robb, were born on the same day last August, spurring a continuing friendship through regular e-mails and photo-sharing.

When Santos posted a photo of 1-year-old Rowan on the Web site, her friend across the Atlantic noticed a white shadow in the baby’s left eye.

Robb, a 32-year-old business analyst with no medical training, found the image curious, so she did some research on the Web. She learned that the white area could be a symptom of an eye cancer called retinoblastoma.

Though it was the first time she’d ever seen the symptom, Robb explained, “I’d seen a news article here in the U.K a few years ago, something similar, and it just sparked a memory of that. Also, the word ‘cancer’ sprang to mind with the same memory. So obviously I was quite concerned and just decided to do more research.”

From her home in Stretford, England, Robb sent a concerned e-mail to Santos. Immediately, Santos made an appointment with Rowan's doctor. The next day, Aug. 8, she was referred to an ophthalmologist. A series of tests revealed Rowan did have a cancerous tumor growing on her retina.

Rowan will lose the eye sometime this winter, and there are rounds of chemotherapy ahead. But Santos has nothing but gratitude for the e-mail warning she believes saved her daughter’s life.

“Grateful cannot even begin to describe how we feel toward Maddie,” Santos told the U.K.’s Daily Mail. “Do I consider Madeleine our hero? Most certainly. If she hadn't sent that e-mail, Rowan's prognosis wouldn't be as good as it is.”

But Robb was self-effacing about the “hero” moniker. “I suppose if that’s how they feel, then that’s what I am to them,” she told Vieira. “I think anybody in my situation would have done the same thing, if they had known what I knew and had the opportunity to say it.

“I suppose I’m a hero in a certain sense, but in another sense, I think I’m rather normal and I care about people.”

Disease and treatment
Retinoblastoma is a cancer of the retina that can affect one or both eyes. If not caught in time, it can spread. The disease can start in the womb, but can affect children up to age 5.

“It’s a rare tumor,” NBC chief medical editor Dr. Nancy Snyderman told Vieira following the interview with Robb. “It usually happens in infancy or early childhood, and doctors precisely look in a baby’s eye with that light looking for a certain kind of reflection. When that reflection is abnormal, it raises the risk of whether this type of tumor is there.

“That white reflection you see in the baby’s eye is sometimes picked up just on routine photography — in this case, a Web picture. But what you hope is that doctors will see it internally before it gets to this stage.”

Santos said she and her husband, David, had noted a slight change in Rowan’s eye color. But the white shadow only showed up in a flash photo, and the cancer was not detected when Rowan had a routine checkup at 9 months.

Why not? “Sometimes doctors miss things,” Snyderman explained. “Sometimes it’s there, but it’s so faint, it really appears later. It’s hard to put blame. Somehow it was missed. With our increasing number of premature babies, there are other problems that could also sort of look like it.

“So it is a reminder for parents to ask doctors, when you go for the baby checkup, is everything OK?” Snyderman continued. “If something looks like this in a picture or your baby’s eyes aren’t moving together or one eye is bigger than another, just pick up the phone and say, ‘Something’s not right.’ ”

Fast treatment is vital with retinoblastoma. According to Retinoblastoma International, a nonprofit that provides information about the disease and raises funds to research it, 87 percent of children stricken with the disease worldwide, mostly in developing countries, die.

“In a case like this, you have to go to your local medical center and see a pediatrician who specializes in just this kind of problem,” Snyderman said. “This is not the kind of treatment that is done in a local hospital. This is where you search out the specialist.”

Wow. She saved a life by googling. That's just crazy. Good for her!