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I Discovered My Son's Eye Disease in a Photo

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It started with pictures that kept showing a golden flash that looked like a gold coin in Benjamin's left eye.

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Megan Webber: Benjamin has always had a freckle in his left eye, so I'd discounted the flash as just a difference due to the coloring of his eye. The photographs did not all show the flash ... or what I later learned is called a "cat's-eye reflection." Initially, only pictures with "red eye" showed this strange golden flash. My sister had taken pictures on our trip last summer, and when she looked at her photos, she saw the same thing and called to carefully tell me that she had seen once on a television show that this could be a sign of a tumor in the eye, and recommended I have Benjamin seen.

I went to my pediatrician and told him that I didn't want him to think I was a "paranoid mom," but asked if he could look at the eye. He didn't see anything, but referred me to the head of Pediatric Ophthalmology at Cedars. Alarmed that he was referring me to someone so senior, I left a message at Dr. Wright's office that very night. When the office called me back first thing the next morning, they said they needed to see Benjamin -- NOW. I started shaking ... pulled over the car, called my husband, and we were in his office with Benjamin within the hour. There we were STUNNED to learn that Benjamin is legally blind in his left eye. He's never bumped into walls or rubbed his eyes -- he'd even just passed the "paddle" eye test in the doctor's office, where he must have been moving the paddle just enough to let his unaffected eye take the test! When they taped up and "sealed" his right eye, his left could not see a letter E the size of a full computer screen 8 feet away. Benjamin is only five years old and he's never complained of any loss of vision, so we were completely shocked!

That shock was then doubled when the scans of Benjamin's eye showed a large white mass in the eye that Dr. Wright's office believed to be retinoblastoma, which is cancer of the eye. This mass is in fact what was causing the reflection. We were immediately sent to the Vision Center at Childrens Hospital L.A. Pulling into the front circle at CHLA, we knew we were at a pivotal turning point in life. I knew that I'd be walking in with one view of the world, but walking out with another. It's hard to take that step. When we walked into the hospital's Vision Center, we found Drs. Lee and Murphree literally standing there WAITING for us!

The doctors explained to us that we were looking at one of three options for Benjamin. Retinoblastoma: cancer in the eye, which we later learned can be fatal if not caught in time; Coat's Disease, a lifelong disease that can damage the eye to the point where eye removal is necessary; or something called VonHippel Lindau disease, an often deadly form of cancer that typically first presents in the eye but leads to tumors in other organs of the body later. Brian and I had to each take turns leaving the other in the room with Benjamin so we could step out and cry without Ben's catching on to our fears for him. We'd wait four days to get Benjamin in the OR with the two surgeons.

Life has a way of standing still when you need it to. Oddly, the time in the waiting room during Benjamin's first surgery was one of the most peaceful and comforting times of the days of waiting we'd endured. At least we were finally going to get an answer. When the nurse came to get us and I saw the smile on her face, I knew we would be OK.

Fortunately, Benjamin's diagnosis is Coat's Disease. While he's been through two eye surgeries, has more surgeries ahead of him, his vision is most likely permanently gone in that eye, and he may very well one day lose his left eye, we get to keep his 10,000 other pieces. I have to say it's amazing how quickly you learn not to be greedy when you see what your alternatives are -- and what other families are facing in these hospitals.

As a family, we are so grateful to the doctors at the Vision Center at Childrens Hospital and their work in rescuing Benjamin. As a mother, I urge you to please look at the picture of Benjamin closely. If you ever see a similar flash on your photos, don't wait to have your child seen. Retinoblastoma and VonHippel Lindau disease can be fatal if not found in time! Coat's Disease can be even harder to control, and the damage to the eye can be such that immediate removal is necessary if too far advanced. Amazingly, all three of these conditions are often first diagnosed because of a photo, as there is no pain with the disease or any other telltale sign, so it is most often the parents who first discover the problem.

As a sister ... thank you to my sister ... and as a friend, I hope this finds someone out there in time to save them from having to walk too far down any of these paths with their children.

benjamin webber coats disease

Benjamin Webber



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64 comments so far | Post a comment now
meredith February 1, 2010, 7:36 AM

OMG!!!! Finally some is going through the same thing but my daughter is now 7.
I know she has NO vision is her left eye atall.She bumps,and falls all the time.Iam calling the reg eye doctor to see if I can get a referral,thanks so much for your post and we do have a All Childrens Hospital here..If you have anymore info for me you can contact me personnely on my private email.Sirripple@msn.com thanks~Mer

Jody February 1, 2010, 7:53 AM

A friend of mine went through this with her child several years ago. She first noticed a white flash in her daughter’s eye. The diagnosis, Retinoblastoma. Please, pay attention to your child’s eyes.

Daddy Brad February 1, 2010, 10:07 AM

Thanks for posting this. I had no idea, it is something that all parents should be aware.

Lynne February 2, 2010, 6:43 PM

My daughters’ teacher went through this after a family member noticed her son’s eye looked ‘odd’. His diagnosis was Retinoblastoma. This was 2 years ago (he was a toddler) and he is doing well.

Phoebe October 7, 2010, 10:21 AM

Thanks for sharing your story, Megan. It brought me to tears and brings attention to this important issue.

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