June is Cataract Awareness Month
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.
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eye diseases and conditions