Cyndi Lee left this as a comment this morning about her experiences as a child with a cataract. She gave me permission to re-post it here. Many thanks to her for sharing. -Ann Z
This is my first time writing anything about my cataracts…. I’m now 41, but I was born with a cataract only in my left eye. My right eye is still 20/20 (God is fair) and as much as I’ve joked to my doctors that they should use me in their thesis, no one takes me seriously. For one, I know the difference between being legally blind vs 20/20 and I can EXPLAIN to the adult world the cons and pros. So for those who are in need of some sanity for their child, read on.
A cataract is exactly like seeing objects underwater in a swimming pool. You see the object and can identity but it’s not crystal clear. I also had a lazy eye – that comes with the territory with most cataract cases in early childhood due to the lack of muscle usage. I’ve had a semi-successful surgery only because I waited too long. The procedure was not as advanced as it is today to fix the lazy eye syndrome related to cataract, but still I’m so grateful and happy for the surgery. The early years, I had to wear the “pirate” black eye piece to school which I endured great ridicule from the students and from which I still have nostalgic scars, BUT my strong parental influence and my brother being next to me had made all the difference in the world. Although in hindsight I would tell a “story” behind the patch, such as “my eye needs rest because I have extra vision like superman”….Something to that line to ease the ridicule…comedy is the best remedy. Encouragement and making sure the eye patch is “fashionable” due to the fact no one else has it makes it special!! Having a degree in fashion has definitely made me realize that being different is the key! It’s the love, support and encouragement the family shows that sketches out the future of the child. My mother still carries the guilt as though she had done terribly wrong during pregnancy but I always tell her I’m blessed as I have a 20/20 vision on my right eye versus the astigmatism my brother has on both eyes.
I underwent a retinal detachment surgery 3 years ago, I went in for a normal checkup and went into the emergency room that night. The damage was severe but the surgery was very successful. I did lose some sense of depth perception and some peripheral vision but my eyesight improved by one line on the chart which the doctor couldn’t explain. No one had ever educated or warned me about the retinal detachment that are prone to happen to people with cataracts, so I would advise any parent to always remember to ask during checkup as their child gets older. I did see flashes during the night while driving and spider web like floating around but thought it was just due to aging. Don’t be alarmed as I still have a tiny “floater” after the surgery but I received results from two specialized doctors and they said it was fine.
The recovery, was tedious, boring and restless! One must sleep facing down ( two weeks for me ) my mom and I’ve tried everything until we came up with a solution. Bought a massage table with the open headrest from Costco and placed a huge mirror under me angled towards the TV so I could at least be entertained and now there’s iPads. The recovery is very important as one can lose their vision if not properly taken care. It is imperative after this surgery to always have a doctor’s visit at least once a year if not twice just to be safe.
I enjoyed reading your comments…. especially in regards to your mother. My son was not born with cataracts. His right eye has 20/20 vision and his left eye is so nearsighted that the doctors believe the vision in that eye is 10/400. He also has myelinated retinal nerve fibers which we recently learned spared his macula. We have been patching since he was 15 months old and he recently just turned three years old on November 2nd. We have never been successful with getting him to wear glasses. However after going to MANY doctors, recently we visited a new doctor with Texas Children’s Hospital and Ethan is now scheduled for an experimental PRK to correct the refractive errors in his eye. It may help him and it may not, but at this point we feel that we have nothing to lose because Ethan’s case is so extreme and atypical… the standard course of treatment of patching and glasses will more than likely not work for him and without the surgery he will more than likely be blind in that eye.
As his mother, it kills me. I feel responsible for the eyes he was born with…. Who’s fault can it be, but mine? I realize that in the wide scheme of things… He does have a good eye and this isn’t the worse thing in the world. But still… it is painful. Worst case scenarios run through my mind…. like what if something happens to his good eye… then he is blind? We can only hope for the best, right?
Thank you for your post.
I would like to thank Cyndi for sharing her story.
I have family members who have cataracts but aren’t blessed with 20/20 in the other eye. Because of that I have read a lot of information about it, in case I will ever get it.
I think it is much easier to live with this condition now, as it was mentioned in that post, that we have different, more advanced options nowadays.
Thanks for sharing your story! I appreciate the insight… My son was born with a cataract. He is almost 2 years old now. I am glad that you mentioned retina detachment. His PO checks for it every time we go in for an appointment. I hope that your eye stays stable. Best of luck! Thanks again!