How a Photo Can Save a Child’s Life

Rerunning this post from 2011, because this topic is dear to my heart. 

7 years ago, our baby boy was diagnosed with eye cancer because of a Christmas photo.  He was almost two at the time.

That baby boy is nearly 9 now, and the story is becoming more and more his and not just mine–so I’m growing reluctant to go into the details with people now that he’s getting older.

But I have to share this, because we nearly didn’t find out there was a problem. The photographer knew that there was something wrong with our son’s red eye reflex, but he didn’t want to scare us or be the bearer of bad news.  His wife, however, insisted, because she had seen an article about an actress whose child had a very similar presentation (that’s what doctors call it).

We’re so thankful she did.

Our son was quickly diagnosed with retinoblastoma, a very rare form of childhood eye cancer.  It affects only 1 in 20,000.  That’s only 300 cases per year in the U.S.  In 2005, we were one of those 300.

And now that it’s been 7 years and he’s healthy, we don’t talk about it much.  But this Christmas I didn’t want to not speak up for fear of spooking someone or being the bearer of bad news.

But here it is:  when you’re looking through your Christmas photos this year, pay attention to the red-eye in your flash photography.  The red-eye  is caused by the reflection of light against the retina.  Pediatricians check for it every time you’re there, and many cases of retinoblastoma are diagnosed at routine well-checks (though our pediatrician didn’t catch it because of the unusual way the tumor presented).

In that Christmas photo taken 7 years ago, our son had red-eye in one eye, and a white eye in the other.  A white or milky-looking pupil in a flash photograph is a classic indicator of retinoblastoma.   The pupil appears white because light is not reaching the retina at the back of the eye.

Note the white eye on the right: a classic sign of retinoblastoma.

Our son’s tumor was growing dead in the bottom of his eye, which meant that the vast majority of the time, his red-eye reflex wasn’t impaired.  We have dozens of photos from that Christmas that look absolutely perfect–even though his cancer was in the final stage.  But one photo was snapped when the tumor seeds were up and dancing around, blocking the retina and causing a white eye in the photo.

A white eye in a photo doesn’t necessarily mean the child has eye cancer, and it’s not the only sign.  (Other signs can be strabismus, a drifting eye, or a red and irritated eye.)  But we found out because of a white eye in a flash photograph.

I have no medical experience.  I’m just a mom whose baby had eye cancer.

If you have any concerns at all, ask your doctor. If you ever see a white eye reflex in a child, have it checked out with a dilated eye exam–it’s not that big a deal.  But it could save a child’s life.

And please, don’t be afraid to speak up.

I’m so thankful someone spoke up to me.

photo credit: J Morley-Smith

Comments

  1. says

    Oh, Anne. How I love your mother’s heart and your desire to honor and respect your son’s story as his own. But, I also love that by sharing this piece of the story you may forever change another mother’s heart. Thank you so much for this. May your willingness to tell your family’s story bless each of you!

  2. says

    I actually met a woman at a blog conference who had a twin son that was diagnosed with retinoblastoma. Her little guy had bilateral retinoblastoma, and was pretty high grade.

    It’s wonderful to share your story — you may save someone’s child.

    Hugging my babies tighter today ….

  3. Suzette @ jambalaya says

    Just revisiting. So sorry that you struggled through this but it has given you so much to share with others! Thank you for using it as a blessing. Life with two (under two!) is keeping me so busy. I miss being on the blosphere hanging out, but seasons of life, eh? Our four month old is coming into his personality and that has its own business! But I’m sure you know all about this all too well! Merry Christmas, Anne! (I’m not assuming I will have a chance to comment between now and then) :)

  4. says

    Thank you for sharing your story. An acquaintance’s infant dealt with a similar issue. Grandma was watching the baby and thought her eye just looked a little odd; Almost like she could see through it. She seems to be doing better now.

  5. says

    Anne,

    Thank you so much for sharing this again. I’m a fairly new reader, so I hadn’t seen it before.

    We are in the process of diagnosing my 2 year old’s eye problems. Thanks to a dear friend who voiced concern, we got his eyes checked and his vision is very impaired. The optometrist noted that he has enlarged corneas, too, so we’re trying to determine now if he has congenital glaucoma or something else similar. Anyway, this really struck a chord with me. I’m so glad your son is fine. :)

    • says

      We had a friend whose child was treated for a detached retina shortly before our child was diagnosed, so at first I was sure that was what we were dealing with. Needless to say, I was wrong. So glad you’re on it and seeking the right treatment for your child.

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