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Watch for the red eye reflex in kids photos!

June 11th, 2007, 07:27 PM
I wanted to please ask all of you that have kids under the age of 7 to take a photo of them in dark conditions without the red eye reflex reduction feature on your camera. Please ensure that both eyes have the red eye reflex and not a white pupil!

I was taking a few picture on my 4 month old baby boy on Friday (June 1st), noticed something was wrong, researched it on the internet and went into sick kids emergency on Saturday because I thought he might either have cateracts or then a tumor based on the info online. Lo and behold he had a cancerous tumor in his eye! On Monday the eye was removed! Yes, within 60 hours.....

Our little guy is thankfully doing ok and is cancer free. We are so increadibly lucky that I happened to pick up on the missing red eye on one eye and the white pupil instead. This aggressive childhood eye cancer could easily have spread to his brain.

I don't want to scare people as this is rare, 1 in 15,000 (or 23 kids a year in Canada), but do want to spread the message. Please tell people you know who have young kids to look out for the while pupil because that is often the first earliest sign of retinoblastoma (it often goes undetected by pediatricians as in our case). In some pics we've taken at an angle you can see the "red eye reflex" in the eye that had the tumor in it, that's why it's so important not to disregard a photo that has the white pupil.


June 11th, 2007, 09:07 PM
Holy cow! That is something else. Thanks for bringing this up. I will definitely be on the lookout for the white pupils. What made you look up the lack of red eye on the internet? Will your son have to wear a prosthetic eye?
I hope he continues to be healthy, such a cutie.

June 11th, 2007, 09:37 PM
What a beautiful baby boy you have! He is just adorable!
I hope and pray that he stays healthy and cancer free.

And thank you so much for this life saving info! I will have to check out my son, as well as pass this on to everyone I know who has children.

I wonder why doctors don't tell people this?

June 11th, 2007, 09:38 PM
Oh thank goodness you caught that! :grouphug:

He will be fine. And yes, Stacer he will probably be fitted with a prosthetic eye when he gets older and it will be changed to grow as he grows. I work for an ophthalmologist that has done the procedure on babies before. They end up fine and normal, just blind in one eye.

June 12th, 2007, 06:33 AM
Omg!!! Thank Goodness you caught it and did something about it!

Definitely thanks for sharing.

Your little boy is absloutely gorgeous:cloud9:

June 12th, 2007, 08:14 AM
I'm so glad your little guy is going to be okay! What a blessing that you found the cancer so early. :grouphug:

This is definitely a tip I'll pass along to my friends who are camera crazy!

June 12th, 2007, 09:46 AM
My goodness--what an ordeal this must have been for you. Thank you so much for sharing the information. I'll pass this along !!

My prayers are with your beautiful boy for continued healthy recovery !

June 13th, 2007, 06:25 AM
What made you look up the lack of red eye on the internet? Will your son have to wear a prosthetic eye?

Well I noticed that his left eye was appearing white in some of the pics so I got worried and went online. Thank goodness for that! Yes, he already actually has a prostetic eye. The new eye ball itself will remain in his eye for life unless there are some complications & the muscles have been attached to it. Now the lense part (a bit thicker then a contact lens and covering the entire eye so it has some white to it too) will be specifically made for him to match his other eye. He now has a temporary one in there, they put the closest match they had at the hospital and hopefully within 6-8 weeks we'll be able to start the process on getting his own made.

June 13th, 2007, 06:31 AM
I wonder why doctors don't tell people this?

It's a pretty rare cancer so most dr's wouldn't even notice it! They do shine a bright light into the infants eyes at appointments but you might get a red eye reflex at certain angles depending on the position of the tumor.

Our pedi who is really wonderful missed it at the 1 week and 2 month appointment since my little guy had this since before birth. Also when I figured something was wrong I went to the dr on call first thing Saturday morning with the pictures and he didn't see anything wrong with the eye after shining a light into it for 20 minutes!!!! He told me it might be something with my red eye reduction on the camera!!! He figured "better safe then sorry" and so I went to sick kids, but I had already figured out online that in this kind of a case a regular dr or pedi won't be able to tell you much, you have to be seen by an ophthalmologist. Sick Kids called in 2 on Saturday evening for us and Monday morning the eye was removed.

June 13th, 2007, 06:34 AM
Thanks everyone & please pass along the info!

June 13th, 2007, 06:44 AM
Good for you for being so on top of things and insisting on seeing the opthamologist. You probably saved your son's life !! I remember a few years ago there was a woman on television, (a beautiful model who was also on a tv show but I can't remember her name), who was warning parents about this type of cancer which had affected her infant daughter. And it was a similar situation, where they noticed that the light was reflecting differently off of one eye.

June 13th, 2007, 07:09 PM
Thankyou so much for posting this info it could help so many others. I am glad you found out in time and your little guy will be ok

June 17th, 2007, 07:53 AM
Just wanted to bump this up there once with a quick update!

Our little guy is doing remarkably well & will be getting his very own prostetic eye to match his remaining one in about a months time (they put a temporary one in right after surfery). As you can see the eye lid and socket look great and things will only get better as his eyes will match perfectly when everything is said and done!

Thanks everyone for the positive thoughts & for spreading the word!

June 17th, 2007, 07:54 AM
Wow, that pic came out huge! Sorry about that!

June 17th, 2007, 11:29 AM
Thanks for bringing that up!! I have treated several children with this condition - perhaps 40 some - so yes, it is good advice. I guess I just assume people do not want to hear about my work all the time - I am so thrilled you have a good outcome. Often, people wait until it is a little late. That said, even some caught early end up less than ideal due to other complications. So, it is certainly something to think about. Cancer of the eyes in one of the pediatric cancers that we see more of lately - and we have no good reason to explain the increase other than ultraviolet light, global warming and children in the sun too much - the sun can get through even cotton hats and since babies often do not wear sunglasses, no amount of sun block prevents the sun from doing damage. Sometimes, though, it is a mutation pure and simple and the etiology is unknown.

I hope your son will do just fine!!!! It is important to keep up with the checkups too but I assume you know that all too well! :grouphug:

June 17th, 2007, 11:42 AM
I wonder why doctors don't tell people this?

I had to add that we tell people this ALL the time - pediatricians anyway. I know no pediatrician who does not explain this and certainly pediatric oncologist educate about this in seminars and pamphlets (I myself wrote a pamphlet on this for GP's and it is among the material Maritimers will probably find in their doctor's literature place. Very often, I find people do not read those things however.

When you bring your baby in for his or her exam, I cannot imagine that your pediatrician has not explained this among other issues.

The Canadian Cancer Society - even though I think they could do more - has done some education on it as well.

The most common is retinoblastoma. In addition to what doglover has noted, symptoms include a white pupil and crossed eyes. It can develop in one or both eyes, and in some cases can be hereditary. A child who has hereditary retinoblastoma may also be at risk of developing a tumor in the brain while they are being treated for the eye tumor. This is called trilateral retinoblastoma, and patients should be periodically monitored by the doctor for the possible development of this rare condition during and after treatment.
Retinoblastoma is the most common primary intraocular (type of eye) cancer, followed by medulloepithelioma (an extremely rare tumor in the eye that requires surgery).It is also sometimes called uveal melanoma because it usually develops in the part of the eyeball called the uvea.

There is also primary intraocular lymphoma which is a type of non-Hodgkin's lymphoma. I won't go on but there are a variety of eye cancers and next to leukemia, brain tumours, Lymphomas, Neuroblastomas, bone cancer and Wilms' Tumor (a fast-growing tumor in the kidney), eye cancers are the next most common type of cancer I see, especially in infants and toddlers. Even babies as young as a few months old are not exempt (I almost said immune byut that would not be technically correct.).

The good news is that 75% of all children survive cancer today - amazingly, when I was a child, the stats were almost reversed so we are making some progress. I guess my common complaint is that we are progressing in treating cancer but we need to PREVENT it!!! (The 25% who do not survive, though, break my heart!)

jesse's mommy
June 17th, 2007, 04:07 PM
Oh doglover, I'm so sorry to hear this, but am very happy you caught it early. By the looks of the second picture, it doesn't seem to have affected him too much. How was he through the sugery? :grouphug:

June 18th, 2007, 05:10 PM
It is important to keep up with the checkups too but I assume you know that all too well! :grouphug:

LOL! I couldn't possibly imagine not being overly neurotic about things after this kind of an experience..... The tumor was just so close to the optic nerve that we got exceedingly lucky that it had not spread elsewhere. Had I not noticed this when I did or had I not been as aggressive in my insistance of getting to an ophthalmologist immediately, well we could have been dealing with a much worse situation here. So yes, ANYTHING and EVERYTHING will be done for our little guy even though I'm not normally one to assume the worst! Pimple? Better make sure it's not a malignant growth of some kind :eek: Better safe then sorry!

June 18th, 2007, 05:42 PM
When you bring your baby in for his or her exam, I cannot imagine that your pediatrician has not explained this among other issues.

Our pedi did miss this during our son's 2 month exam even though she specifically looked for the red eye reflex (I suppose it must have been at an angle from the right as I can see "red eye" in photos taken from that angle). Our son was very sleepy and hardly cooperated with keeping his eyes open as well on that day. I really wish this had been caught earlier (I had never heard of this before), but at the same time I don't really fault the pediatrician either as it's relatively rare..... Let's just say that any baby in that office will never ever be allowed to leave without a very thorough eye exam after this!

Having said that though I can completely understand your frustration. This shouldn't go unnoticed and it does time and time again in spite of all of the efforts of professionals like yourself. Must be aggrevating to witness it repeatedly.

Now on Saturday I actually went in to see the dr on call (didn't know if Sick Kids hospital would call in an ophthalmologist on Saturday and figured I'd be better off seeing the dr on call instantly and get the answer to that rather then waiting in emergency for 5 hours to find out they'll see me on Monday instead!). The dr on call had a look at the photos I brought in and did shine the light into our little guy's eye for a long time and still did not see anything wrong!!!! Of course he did think we should go to the hospital to "if nothing else be reassured everything was fine". He even suggested it might be a problem with the red eye reduction feature on the camera though! Now that was a bit of a surprise, the white pupil is just so apparent in a lot of the pics I brought in. Maybe he was just trying to not scare me? Don't really buy that though....

The nurse at the hospital couldn't understand why I was in emergency due to getting a white pupil in pics either! So I do agree, a lot needs to change! We're working on creating some awareness through sharing Leo's story and I'm hoping we might accomplish something :fingerscr We do have a bigger thing in mind and things are looking very promising! Won't jinx anything by going into detail, but I really hope things move forward! Assuming they do I'll be glad to post an update with info! ;)

June 18th, 2007, 06:04 PM
LOL sorry about the repeat in info! After posting I noticed that I posted all of the info about our pedi and the dr on call earlier already.....

June 18th, 2007, 07:07 PM
:lovestruck: Your son is absolutely gorgeous! What a beautiful baby boy and so lucky to have concerned parents!

I have a 6 month old grandson, who is fine as far as we know, but I will definitely pass on this information to my son, just in case......

Thanks for making us all aware of what to look for! :)

June 19th, 2007, 08:22 PM
How wonderful that you are willing to share your story so that others will learn from it. And yes, it IS frustrating to see it time and time again!! But we are making good progress in treatment - it is the diagnostic skills of ER docs (I would be very angry with the doctor who pointed to the red eye camera issue, give me a break!If one of my pediatric Residents had said that, s.he would be in serious trouble with me and with our program!! I do know Sick Kids has a person in charge of talking to people who do have complaints and she is wonderful at what she does so you might consider telling her about that experience - it might alert the ER there to that kind of thought process. I do not want to fault or 2nd guess someone who may have been on call for a long period of time but we have been working to change that system (so that docs work fewer hrs but I still put in 70 hr weeks - there is a shortage of pediatric oncologists, alas!) but it would be worth it to let them know that this occurred and that comment should never be made again and parents must be taken seriously because they know and see their children and can tell you so much more than a cursory exam can!! I did my Residency at Children's in Boston - a wonderful hospital but one of my mentors had come from Sick Kids - (He could not pass up Harvard, lol) - and there are still good people there. I sit on a committee with the CEO and several other people there so I do plan to tell them about that incident if you do not mind.

That said, I am happy that you had an excellent outcome. As you can imagine, there are others that are not. It is really also incumbent upon parents to look for things that are out of the ordinary - while they may not always have the ability to know what medical problem they are seeing, an observant parent knows his or her child and can make a significant difference by ensuring something that does not look right 0- whatever it is - is checked!! Even if it turns out to be something simple and not even a medical problem, that does not matter. What matters is caring and observing and knowing your child's normal behaviour and development. In my office, there is no such thing as a frivolous question or visit. Everything is important!!!

Good luck with his progress - looks like he is real trooper - and you know, most pediatricians will tell you, we prefer to work with kids. They really are so better at being patients!! They rarely complain and when they do, you know it IS a problem.

June 22nd, 2007, 08:38 AM
Your information is really insightful, thank you so much!

Now as to the dr on call. He is in private practice, not at sick kids (and so I got his telephone number from the pediatrician's answering service). The dr at sick kids did confirm that all was not as it should have been and dispatched the ophthalmologist asap. The resident dr did then come in to check our little guy before we went to the eye department as it was a "valuable learning experience". Of course that said it all when no one had mentioned anything about what might be suspected yet!

Anyway, the dr on call did call us on Monday to check how things went at sick kids on Saturday and got the shock of his life when he heard our little guy was already is surgery! So needless to say he will never forget his experience with RB......

Our next EUA is coming up in the middle of July so please keep your fingers crossed for us that the other eye is still unaffected :fingerscr

June 23rd, 2007, 02:11 AM
I'm sorry you had to go through that.your boy is a cutie.i miss the baby days.
my fingers are crossed the other eye is ok:fingerscr :fingerscr

June 24th, 2007, 03:49 PM
Awwww he is such a beautiful baby!! It's wonderful that he's doing so well!!

CK my son doesn't have a pediatrician, I was told when he was born, that this isn't done anymore, andthat he is only to see a family doctor. Unless there is a problem, he doesn't see a pediatrician:shrug:

June 27th, 2007, 02:54 PM
I'm so sorry your gorgeous little boy went through this. I've been going through Grace's pictures (all 1500) looking at them.

I'm glad he's on the mend, and he seems a happy boy.

Oh, and Grace has a GP as well. We also were told that a pediatrician wasn't necessary.