RENEE MONTAGNE, HOST:
Now to our series Joe's Big Idea, where NPR's Joe Palca tells about the minds and motivations of people who create remarkable new inventions. Today, in the first of two parts, he explains how a family photo album led to a way to screen infants for a life-threatening cancer. That story begins with a courtship - two scientists in love - who go on to fight for the life of their infant son. Here's Joe Palca.
JOE PALCA, BYLINE: I've met scientists like Bryan Shaw: smart, self-confident, maybe even a bit cocky. But Bryan has this goofy, kind of sweet sense of humor that makes him more loveable than annoying. In 2007, he had it all - I mean, a great post-doc at Harvard, promising job prospects, and he just met this girl, and he knew she was the one.
BRYAN SHAW: I said, what do you do for a living? And she said, oh, I'm a chemist. I said, oh, what kind of chemist? She said a bio and organic chemist. And she said, oh, what do you do? I said, oh, I'm a chemist, too. And she goes, what kind of chemist? I said, well, I'm a bio and organic chemist, too. I actually kind of sort of wrote the book - at least a chapter in it.
PALCA: Bryan went after Elizabeth with a passion.
ELIZABETH SHAW: He was pursuing me like white on rice.
PALCA: She didn't stand a chance. They were married April 9th.
SHAW: Why didn't we get married that day?
SHAW: Because I got out of work early.
PALCA: Soon, Elizabeth got pregnant, and Bryan started scrambling to find a job and win grants so he could support his young family.
SHAW: So, this is it. This was the big Super Bowl. I was going to go out on the job market, show my research and start my career.
PALCA: Now, to be honest, Elizabeth told me she struggled a bit as a new mom. A bad case of the baby blues, she said. But one thing about parenting that came easily was photography. She took a lot of pictures. And in those photos, you could see two young parents, day after day, falling in love with their new baby. But this is where the story takes a terrible twist. When baby Noah was three months old, Elizabeth began to notice something in some of the pictures: an unusual white glow coming from where the black pupil ought to be.
SHAW: I was seeing these white-eye pictures popping up, and I would just delete them, because it's a digital camera. And then when they started to pop up a lot, I was, like, this is weird. So, I remember I flipped through the camera manual to see if there was something about white eye, but it was always about red eye. And then I thought, oh, that retinoblastoma thing.
PALCA: That retinoblastoma thing was something she'd read about in a parenting magazine. Retinoblastoma is extremely rare, but it's terrifying. Children who have it form tumors on the back of their eyeballs. Treatment could mean losing an eye, or in the worst case, death. Doctors diagnose the disease by shining a light in a child's eye. If there are tumors, you'll get a white reflection. So, when Elizabeth suspected she was seeing that white reflection and flashed pictures of Noah, she did what we all do these days.
SHAW: I Googled it. I saw pictures of what they call the coria, which is the white eye, and then just this unsettling feeling settled in, like nausea, like oh, no. And I told Bryan, and Bryan was, like, no, forget about it. Get a hobby.
SHAW: I did worse than blow it off. I grabbed the camera and I started taking pictures at different angles, and some of the pictures wouldn't have the leukocoria, and others would. And I said, look, honey, it just depends on what angle you're taking the picture at. So, yeah, I poo-pooed it.
PALCA: And to be fair, there were good reasons to poo-poo it. As I said, retinoblastoma is rare. In this country, there are fewer than 300 new cases per year. Bryan basically told Elizabeth she was more likely to win the lottery. And because Bryan is Bryan - smart, confident and usually right - Elizabeth believed him, and her anxiety dropped to a dull ache. When it was time for their next well-baby visit a month later, Elizabeth made a list of questions for the doctor on a yellow sticky note. Is there a problem with Noah's eyes was at the bottom of the list. But when the doctor looked in Noah's eyes, she saw something. She left the room and came back a few minutes later to say she'd made an appointment for Noah. He was to see an eye specialist later that same day. The specialist made her diagnosis immediately.
SHAW: She said, OK, it's in one eye - oh, yup, it's in the other eye, too. It's bilateral.
PALCA: Retinoblastoma: tumors in both eyes. Bryan told me he remembers holding Noah when he heard the news, and it was if the words just bounced off him.
SHAW: So, Noah was sitting on my lap, and I just stared at him. I remember I just kept looking at him and nodding, like, OK. That's great. He's still great. But Elizabeth jumped up and put her hands over her ears and just started screaming and running around the room shrieking.
SHAW: I went crazy, like, because I knew what retinoblastoma was, because I had read about it on the Internet after I had suspected that's what he had. And when the doctor finally said this is what it is and I had read what was going to happen, I just - visceral just overtook me.
PALCA: The next few months were almost comically awful. Pushing a stroller through the snow for doctors' appointments, radiation appointments at five in the morning before the subway was even running, buying cases of hand sanitizer to ward off infections while Noah was on chemo, and finally, surgery to remove Noah's right eye. For Bryan, Noah's illness left him feeling confused and lost. Why hadn't they realized what those pictures meant, and if they had, would it have made a difference? He started asking Noah's doctors that question, and most of them said...
SHAW: ...by the time you saw white eye, by the time you saw leukocoria, you're probably not going to be able to save the eye.
PALCA: And this is where Bryan started thinking like a scientist. Really, he thought. How do they know that? So, he dove into the scientific literature.
SHAW: There's no studies on it. Nobody's ever followed the longitudinal frequency, the daily rate of leukocoria or white eye. So, this whole idea that by the time you see the white eye, it's too late to save the eye, totally anecdotal.
PALCA: So, Bryan, being Bryan, decided to try to do his own longitudinal study using Elizabeth's pictures of baby Noah. It wouldn't be definitive - just one subject - but maybe it would teach him something about just how early you could detect signs of retinoblastoma. When Bryan started going through the pictures, he was dumbfounded. Using off-the-shelf software, he found the first signs of white eye when Noah was just 12 days old. He told the doctor taking care of Noah what he found.
SHAW: I said what would have happened if I would have brought my son in at 12 days old or 36 days old, you know, or even two months old? And he said, well, if you would have brought him in the first month, he probably wouldn't have lost his right eye.
PALCA: Bryan Shaw has made it his life's mission to build a tool that parents can use to find the signs of retinoblastoma at the earliest possible moment.
SHAW: In America, it's going to preserve vision. But overseas, where 90 percent of the deaths from retinoblastoma occur, we could be saving lives.
PALCA: Tomorrow, we'll tell you just how that quest is going. Joe Palca, NPR News.
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