Red Reflex

Our resolve NOT to look things up lasted approximately 5 minutes... it lasted until I could turn on the smart phone and start googling.
What is this red eye reflex?  This was a term that neither one of us had ever come across before.  We knew that the pediatrician always checked the kids' eyes during well-child checks, but we always thought it was to check that the pupils were round and equally reactive.  We have since learned that there are MANY reasons why they check the eye:  they check the pupils, the cornea's appearance, they check visual acuity, ability to fixate on objects, alignment, and they check for a red reflex or presence of leukocoria to name just a few.
The red reflex

The red reflex test or "Bruchner's test" can detect many different ophthalmologic problems in children and should be performed as part of a normal newborn screening.  In normal eyes, the practitioner will shine a light into the eye and will see a red reflection with the ophthalmoscope.  This is also what causes "red eye" in pictures.  From some stories we read on the internet, this is one of the ways their child's problems were diagnosed, parents would notice that the eyes didn't match in pictures.  This isn't something we noticed before our pediatrician visit... but looking back (hoping to find 2 shining red eyes) we saw what she saw:


His left eye show no red reflex



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So, Tommy had no red reflex (or rather, he had leukocoria, which means white pupil) in his left eye.  The pediatrician casually mentioned the word "cataract".  She did not mention the other horrible things it could be such as retinoblastoma, chorioretinal coloboma, persistent hyperplastic primary vitreous, endophthalmitis, Coats disease, retinal detachment, or other seemingly scary things.  We scared ourselves silly googling information (even though we knew better), then scared ourselves more by trying to dig into the scientific literature.  The literature was perhaps scarier because we read that the incidence of retinoblastoma was not comfortably (or significantly) different than a cataract in the literature we could find.

We spent 5 days torturing ourselves with all of the terrible possibilities.  Did he have cancer?  Would he lose his eye?  Would he be able to see?  We cried, we prayed, and debated about how many other people to torture with this information.  In the end we told a few close friends and just a few family members.  It got to the point where I just had to look at him and I would cry... so telling people about this just seemed worse, it was like reliving the terror.  We were sleep-deprived, had a house full of sick kids, and I was post-partum... looking back, I still am not sure how we survived that weekend!  This was the only positive thing about having a house full of sick kids- they provided a much-needed distraction from our own imaginations.

And so it begins....

When Tommy was 4 days old, he had his first pediatrician visit.  We have been seeing this pediatrician for 8+ years and LOVE her.  We expected the normal new baby weigh in visit complete with lots of oohing and ahhing about how cute he is and amazement over how big he is.  We had also brought one of our older daughter's (who was home sick that day) and our doctor was concerned about her cold and was examining her!  Just as our pediatrician was walking out the door, she stopped and said "Wait, I have to check his eyes!"  She later told me that something just 'clicked in her brain' that she needed to do it again, as she thought she had already checked.  She had no reason to be concerned as the report from the hospital pediatricians was completely clear, perfectly healthy baby.  She looked in his eyes, then she casually asked "Did anyone say anyone at the hospital say anything about his eyes?".  Nope.  "Hmm, do you have a family history of congential cataracts?"  Again, No.  She then turned out the lights and examined again.  Now, we have known this doctor for a long time, we have a decent relationship and we could tell there was something wrong.  Without really panicking... she was a little rattled.  She told us that she could not see the red reflex in his eye.  The pediatrician left the room, promising to be right back.  His dad and I are both pharmacists who are relatively intelligent, I even work with kids, but this did not trigger any alarm in us, especially in our sleep-deprived state.  So, we waited.  She came back telling us that we needed to see an ophthalmologist very soon and she was working on getting us an appointment (not an easy feat at 4:30pm on a Friday afternoon.)  Ok, now we started to worry a little... but still no big alarms, after all, I had lazy eye as a kid and was doing just fine now.  When she came back with the appointment, we asked what would happen if it was a cataract, couldn't they just remove it and everything would be OK?  After all, older adults have cataract surgery all the time... right?  She was hesitant in her reply and evaded my question with a "Well, I don't really know, this isn't my specialty, that's why we have to get you to an ophthalmologist."  This is when I started to worry a LOT... this pediatrician was pretty smart, and I could tell she was trying NOT to go through all the worst-case scenarios with us.  So, we took her at her word and left.  Of course, in my sleep-deprived, hormonal state, I was weepy, but still was thinking it couldn't be THAT bad. 
When we got to the car, we agreed to not obsess about this and to not look things up on the internet.  You see, we can be our own worst-nightmares.  First, much of the information on ANY medical condition on the internet is crap and some of it is just plain dumb.  Second, we know just enough as pharmacists to understand some of the information, but not enough to make complete sense of everything (especially relating to the eye!)  How long do you think our resolve lasted?