Reader post: June is Cataract Awareness Month

Many thanks to Sheri from Stewart Snippets for writing this, and giving her permission to re-post it.  You can read the original here.  June is Cataract Awareness Month, and so I’m publishing a series of posts on pediatric cataracts.  If you’d like to write something this month, please let me know – Ann Z

June has been designated Cataract Awareness Month.  If you Google or Bing “Cataract Awareness Month”, you will likely find a whole lot of information about cataract surgery for seniors.  You need to Google or Bing “pediatric cataracts” to find information about cataracts in children.  This is because:

  • Cataracts present at birth are known as congenital cataracts* and affect approximately 1 in 2,000 children**.
  • Cataracts in children (emphasis mine) are uncommon* (approximately 1 in a thousand to 1 in 10,000 (emphasis mine) children).
  • Cataracts developing as humans age are relatively common, affecting roughly 60% of people over the age of 60, and over 1.5 million cataract surgeries are performed in the United States each year.***

Our son, Adam (aka Buzz), suddenly developed bilateral cataracts (i.e., cataracts in both eyes, not just in one) when he was about 2.5 years old.  As you can see from the statistics above, this is very rare.  As you can imagine, as parents, we were flabbergasted, floored, and flummoxed.  Since it is the age of computers, my husband and I ran to the computer to Google, Bing, and whatever else we could think of to find information about other children who’ve had cataracts.  We wanted to know what we could expect.  Unfortunately, we found very little information pertaining to our exact situation.  We found lots of information on congenital cataracts (i.e., cataracts that are present in a baby’s eye(s) at birth).  We were able to glean some information from what we could find, like what the surgery might be like but since most babies are fitted with contacts or glasses and do not have intraocular lenses (IOLs) placed as our son was going to, we had no frame of reference to prep ourselves for what was to come.

My husband and I were not the only ones freaking out.  Our parents were extremely frightened, our friends felt bad for us, and our daycare provider was worried for all of us.  She worried for Adam but she also worried for Stu and me.  She happened to know of a woman at her church who had a little girl about Adam’s age who’d been born with a congenital, unilateral cataract (i.e., in only one eye).  This little girl had eye surgery when she was only a few days old and was fitted with a contact lens.  She needed to patch her good eye for several hours a day.  Trying to get a baby/young child to keep a patch over their good eye, forcing them to use their weaker eye requires feats of extreme patience and compassion.  My daycare provider put me in contact with the little girl’s mom and she and I talked, and she listened to me cry for at least an hour.  It was only later that I realized despite the good intentions, the information that this mom had provided was pretty different from what our experience was about to be.

From what I understand, babies who are born with congenital cataracts have them removed at a very young age/as soon as possible since babies’ and children’s eyesight is still developing.  If something is affecting sight in one or both eyes, the brain will eventually think, “Huh…I’m not getting any signals from that eye so I guess I’ll just tune that visual pathway out.”  If cataracts are not removed expeditiously, permanent eyesight damage can be done.  This was true for Adam, just as it is for a baby.  Then, babies are usually fitted either with contacts or glasses since they’re physiology is just too little/fragile to implant IOLs.  As technology advances, I believe eventually these babies will receive IOLs, if that is what their parents choose.  Otherwise, these parents have lots of struggles with getting their babies to lie still while they put in and remove contact lenses or while attempting to get their babies to leave their glasses on (though children who’ve had bilateral cataracts removed seem more likely to keep their glasses on since a world that is crisp and clear is more pleasurable to view than one that is incredibly blurry).

That scenario was not the same for Adam – he received IOLs right away and was fitted for bifocal glasses.  This was because his IOLs’ “prescription”, if you will, were approximated so that when he is done growing, he will not have to wear glasses at all (we hope, we hope!!).  Currently, because Adam’s eyes are still growing, he uses his IOLs (with the aid of bifocals) to see things in the distance clearly.  Adam uses the close up portion of his bifocal glasses to see things near to him clearly.  We had absolutely no difficulty in getting Adam to wear his glasses since he was old enough (sort of) to reason with and because when he is not wearing them, he is essentially blind.  For a short period of time, Adam was diagnosed with amblyopia (i.e., one of his eyes had sight that was significantly better than the sight in the other eye) requiring him to wear a patch over his good eye for several hours a day.  Since Adam was three years old by that time, he had no trouble understanding (a little) why he needed to wear a patch and how important it was and leaving it on.  He rarely gave us any grief about patching.  And he only needed to patch for about two weeks.  Some parents must patch their children’s eye for years!!

Here is a photo of Adam wearing progressive (no-line) bifocal glasses and with the sunlight reflecting back from the IOL in his right eye.

After Adam’s surgeries, recoveries (you can read a bit about that intense process here), short time of patching, and prescription for glasses, we were pretty much a go.  Adam needed to be seen by his surgeon quite often after surgery and he did have some trouble with his body accepting the IOLs and needed lots of steroid eyedrops and even had to take oral steroids for a while.  But as time has gone on (we are now approximately 18 months out from his first surgery), we need to see the surgeon less and less.  In fact, Adam was most recently seen last week and will not need to be seen again, barring any emergencies, for an entire year!

In honor of Cataract Awareness Month, I implore you to go with your gut (see what my gut thought, here) and have your children’s vision checked by a pediatric ophthalmologist (if you can).  It just might save your child’s eyesight.  Additionally, in light of what my husband and I (and Adam!) went through, I’d like to offer my e-mail address (sheris162@gmail.com) to anyone who is in a similar situation or just has questions about our experience.  It was great to talk to the mother of the daughter who had the congenital, unilateral cataract as a newborn because I didn’t feel so alone but it would have been even better to talk to a mom who’d had a nearly-preschool aged child who suddenly developed bilateral cataracts.  The two situations really are/can be quite different.

http://www.pgcfa.org/cataract.htm

** http://www.childrenshospital.org/views/april03/cataracts.html

*** http://www.medicinenet.com/cataract_surgery/article.htm

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