This morning I took my kids to their tennis lesson. The child who had his lesson before Jane and Alexander was getting a patch put on his eye by his mother. He was a bit younger than Alexander.
“Four hours.” She said, gently pressing the patch onto the bridge of his nose.
“My son wears a patch too.” I told her.
“Your husband and I have talked about it at length.” She snapped, and then a little more gently she continued, “it’s terrible what these kids have to go through.”
I smiled for her and picked up my book.
When Alexander was six months old I knew he needed the surgery, but I was terrified for him, and I was thinking that we’d take the conservative route offered to us (it never should have been offered), and to patch Alexander for eight hours a day, four hours each eye, and wait until he was about two for the first surgery.
While taking Jane to nursery school one of the moms took a look at Alexander and said, “You’re going to fix that aren’t you?” And then she took her glasses off, showed me that her left eye immediately turned into her nose, and said, “you can’t make friends when no one can look you in the eye.” She went on and on to detail a chilhood with no eye contact, and finally no one talking to her, because it was difficult for them to know if they had her attention. She talked about the loneliness she attributed to her eyes, and the fact that things got better almost immediately after her first surgery in middle school.
This wonderful woman also told me how she had to have adjustments every ten years or so, and that the surgeries spanning into her adulthood would not likely be necessary had her eyes been corrected as a child.
If an angel had swooped down on June 11, 2002 and said to me, “Before you hand your infant son to the anethesiologist I’ll allow you to give up your vision and he will have his.” I would have made the accommodation in a second.
Strabisumus seemed like the cruelest of conditions in 2002.
In April of 2003 Alexander went back for a second surgery, and he was not the youngest child, therefore he was not the first on the schedule. When they were a few moments late I anxiously asked the nurse what to do. “Sit tight.” was the gentle reply.
I asked again after half an hour, and again after 45 minutes, when finally the nurse replied, “Our doctors are running behind schedule, because they are operating on a five week old girl who was born with no vision.” I sat down, I shut up, and I hugged my baby who could see quite well out of one of his eyes.
This morning I put a contact lens into Alexander’s eye. Only one lens, because he has 20/20 vision in the other eye. He patches just six hours a week, which is remarkable. Alexander’s eyes are not perfect, I can see them turn in at the end of a very long day, and it’s possible that another surgery is on the horizon for him.
My son sees, and he sees well. He doesn’t feel burdened by his diminished eyesight most days, but I have to confess that as his mother I do.
I understand how the mother of a 5 year old could feel overwhelmed, and as if her son isn’t getting the gift of a typical childhood, but really he is. They all are, because this is their typical. This is Alexander’s normal, and it’s a good childhood, and it’s really not a terrible burden for the kids when we learn to keep our anxieties to ourselves.
I have had strabismus all of my life. I had my first, and only, surgery at the age of 5. I remember my mother taking the eye patch off far too early– even at that age I knew it — and my “lazy” eye still turns in towards my nose. Although, it is not quite as bad as it was before the surgery. There are pictures of me as a toddler where it looks as if my left eye is completely white. I am nearly 40 years old and I still wear glasses. At the end of a long day of reading or being on the PC designing graphics, my eyes do get strained and I have to close my left eye in order to see clearly.
I remember being taken to another pediatric ophthalmologist shortly after the initial surgery and hearing him tell my mother that I would need several more surgeries to correct my vision. For one reason or another, that did not happen. I had bottle bottom glasses for most of my school years and I was teased mercilessly by the other children. Kids can and will be very cruel. It wasn’t until I insisted on getting contact lenses at the end of 8th grade that I felt confident with myself. Boys who formerly wouldn’t give me a second glance started to notice me. It was very strange. Now as an adult, I wear my glasses and do not worry about contact lenses. They always irritated my eyes anyway. I could not wear the soft lenses, I had to wear the semi-hard, gas permeable kind.
I say all of this to point out that unless Alexander has severe trouble seeing, even with corrective lenses or glasses, that he will be fine and for you not to worry about him having more surgeries or not. I made it through and I was literally blind in my left eye until I was five years old.
I could likely benefit from another corrective surgery because of all of the advances that have been made since 1976, and I may ask my doctor about that on my next visit. I have strabismus and myopia in the left eye and hyperopia in the right. However, my childhood was not ruined because of my defective eyes. And other than the cruelty of other children at school, it wasn’t bad at all.
I too have strabismus. (I’m 23)My eye started going inward when I was about 3. My mother took me to specialist who immediately agreed not to do surgery. I have a much older brother who also has strabismus and had numerous surgeries done on his eye that did nothing but ruin his vision. I guess my parents were much more careful with me. I was put in really thick glasses and of course children were cruel and I got teased a lot. By 4th grade my confidence was shot. I eventually got contacts which helped a lot! Today my eye isn’t bad at all. I’m not really sure if my left eye goes in because some people tell me it does and others say it doesn’t. Either way I guess it’s not that noticeable. I’m just really glad my parents didn’t allow anyone to operate on me. I still use corrective lenses also . As for my older brother he only needs to use one contact because he is legally blind in the eye that was operated on! His eye is still kinda noticeable although it has gotten better over the years. When he was 30 it still turned all the way inward. At age 45 it just barley turns outward sometimes. I’m not sure how it corrected itself at such a late age . I think the one contact may have somehow contributed or he just found a doctor who knew what he was doing?
I’m now six months pregnant and I really hope my son doesn’t get cursed with this. If he does I know how to handle it, but I really don’t want him to have to go through all the things his uncle and I have! So far no one in my family who has strabismus has passed it on to their children. It seems to be the ones not affected by it that are passing it on. My father did not have it.( it came from his side) I have a niece who doesn’t have it and neither does her mother (my sister) but her son (my great nephew) does have it! He just had surgery a few weeks ago. :( Hopefully it was the right thing to do!
I don’t feel like it affected my childhood too much!
I also have strabismus. My mom noticed my eyes were crossed when I was about three months old. I had my first surgery on one eye when I was 6 months old and the second eye was done at 18 months (nearly 30 years go!). This was followed by the patch on my strong eye until I was 3. I honestly have no memory of the surgery or the patch and only vague memories of follow-up visits with the doctor. My childhood was great and no one noticed that my left eye turned out a wee bit (and still occasionally does when I’m tired). My vision was perfect throughout my childhood and I only became near-sighted when I turned 13….but that was due to crappy eye genes in general, not strabismus.
I wish I could encourage all parents to be as aggressive in treating strabismus as you are and my parents were. I work with kids and I once ran across a 4 year old girl with untreated strabismus. Her left eye was turned in and clouded over. Her mother told me she was losing her sight in that eye and they only JUST discovered they should have taken care of this when she was a baby. I was so sad. So sad for the little girl who lost her vision. So sad for her mom who thought she was making the right choices all along only to learn she wasn’t vigilant enough with her child’s health.
Thanks for telling your story. I hope parents read it and learn to confront the realities of their kids’ health instead of hiding behind their anxieties.
My brother’s girlfriend was born with a cataract in her eye and had to wear patches daily (her mom made her wear them religiously) until she was 9. She’s now 24 and several surgeries later, her eyes are doing great. I’m sure Alexander’s eyes will improve just as well as Dani’s. :)