Mom of 2 sons with exotropia recommends strabismus surgery

–written for Eyes Apart by Caroline Clarke
Photos in this story are property of Caroline Clarke. Click on a photo to be taken to Caroline’s flickr page for rights and permissions.

Jordan before strabismus surgeryI have 2 sons and they both have extropia. My oldest son Jordan is 2.5 years old. Jordan has extropia in his left eye. He also has cerebral palsy and is visually impaired due to a lack of oxygen when he was born. The visual impairment has nothing to do with extropia. We were told that his eyes were related to the cerebral palsy, so we had no problem with wanting another child.

My younger son Matthew is 10 months old and both his eyes have extropia. To see his eyes were similar to Jordan;s was devastating to us thinking Matthew would suffer a disability also. From the time Matthew was 2 months old, my husband and I walked around grieving at the possibility of the unknown regarding Matthew. We got him checked out by a Pediatric specialist and Matthew is fine, no cerebral palsy. He has reached all his milestones so far.

Jordan after strabismus surgeryJordan had eye surgery on November 15, 2006, he was 2 years, 2 months old. The photo in the first paragraph was taken before his surgery, and the one in this paragraph was taken after his surgery. Right away we noticed an incredible difference with his development. He watches television now, he can play with toys properly, he looks at pictures and tells us what they are. Before the surgery, he couldn’t do any of this, because the eyes were seeing double, etc. Even though he has cerebral palsy, ever since his surgery, he pulls himself to a stand and now he is taking steps when he is standing along the couch.

Jordan’s eye surgery took 40 minutes. We were told that Jordan will feel as if he has sand in his eye (the stitches) and the redness on the whites of his eye should take about 6 weeks to clear up. People come up to us now and are floored to see how his eyes are aligned properly. They also see that Jordan can do things better now then before his surgery.

Please check out these photos of Jordan and Matthew. The first few photos you will see how Jordan looked with his eye turned outward before his eye surgery, the day right after he had eye surgery and how Jordan looks now. After the photos of Jordan, you will see a very young Matthew and how he looks today. He has not had his eye surgery yet. They are waiting for Matthew to turn a year old.

Continue reading for Matthew’s story and photos.

Matthew has exotropia in both eyesMatthew will be getting eye surgery on May 16, 2007 for both of his eyes. He will be 1 year, 1 week old. His development is normal as we can tell, but I can tell that he has a hard time do certain things, because he can’t see them properly like play with toys. With toys, he either over grabs or swips at toys. But from learning about Jordan and seeing the difference, I have no doubt that Matthew will be just fine.

I RECOMMEND surgery before any therapy on the eyes. Why prolong the inevitable. For cosmetic reasons, it’s worth it also. I love my children and I am their cheerleader. I only want the best for them.

Matthew age 8 monthsMatthew’s eyes were really wall eyed at about 3 months old (see third photo on this page). Here is another one where he is about 8 months old… it shows his eyes better as his age is getting older. But still surgery is a definate must. He is missing on his development properly, just as Jordan did.

As the mother of my 2 sons, I am really tuned into the eyes from everyone. When people look at Matthew, they pretend that they don’t notice his eyes, come on!!! I am upfront regarding Matthew’s eyes with them and it gets me when they act as though they don’t notice. I had one doctor ask me if Matthew was blind. I have had half a dozen people come up to me and shared their stories of strabismus.

I invite you to look through our photos. You will see Matthew who is the baby and most all his photos, his eyes are turned outward. You will also see Jordan and how he looks now after his eye surgery 5 months later.

For those of you who have fears of eye surgery, please do it. Your self esteem is worth it, you are worth it. I used to be bullied in grade school, because my parents were poor. I am fully aware how children and other people can be cruel. I certainly think of that for my own children and I can make the difference for them this way. You can also make the difference for yourself with eye surgery. If the eyes are not fixed at an early age, the brain gets confused of 2 separate images and will shut off one eye. If the brain keeps shutting off one eye, it eventually will ignore that eye and that eye may become blind for good.

Photos in this story are property of Caroline Clarke. Click on a photo to be taken to Caroline’s flickr page for rights and permissions.

23 thoughts on “Mom of 2 sons with exotropia recommends strabismus surgery”

  1. Hey Caroline this was a good idea letting the public know on what to look for and the great accomplisments that come out of it . It is very rewarding. both boys are gorgeous. keep you’re head up you are doing a beautiful job. krissy

  2. Great article. Thanks for sharing.

    I have alternating exotropia since childhood. I am now 29 and have never performed any surgery. One of my eyes, the left, is the strongest and my right eye usually wonders off when I am tired or distracted. However, both eyes have the ability to deviate to the side.

    I have recently been researching the possible treatment options for myself at this age. I might go with surgery and therapy.

    Regarding your blindness comment at the end of the article…I have been reading and asked ophthalmologists and most indicate that you cannot go blind from strabismus.

    -Fabio

  3. Thank you for this Caroline. Great idea to get your experiences out there for others to read.

    My little grandson who is just turned 5 has had the surgery. It did not completely correct, inasmuchas it reverted somewhat within a year. He’s going in again, probably in the late Spring, and both eyes will be corrected. But it made a huge difference in his life to be able to see straight.

    I too have read about the serious consequences which can come from ignoring strabismus, and would encourage any parent to pursue this for their child’s sake. It’s an emcompassing problem, with an easy solution.

    Good luck to your beautiful children Caroline. Elisabeth

  4. What a great story!! Both of your boys are absolutely beautiful!! I am going to spread the word about this so other parent’s whose children are about to have surgery will have a better understanding of it. Thank you for sharing this with everyone.

    Kelly H.
    http://www.bjortandcompany.com

  5. Thank you for sharing this. It is so important. I suffer from exactly what you are trying to warn others about. The doctors didn’t pick up on my lazy eye until it was too late, at which point there was a weak period of patching (I’m not saying this doesn’t work, it just wasn’t implemented properly in my case) and I lost most vision in my bad eye. Now I’m having to face the prospect of surgery, but mostly for cosmetic reasons, and while I’m comfortable with that, it’s also a risk when I could “live” with the way things are now. But yes, for cosmetic reasons too. Not just because children can be cruel (and yes, they were), but also because eyes are the first point of contact between human beings. No matter how open or kind another person is, when they meet someone with an eye condition, it is hard for there not to be a slight, sub-conscious, judgement call. No one should have to deal with these subtle barriers every day of their life when there is surgery to correct it.

  6. I completely agree when you said noone should live with this condition when there is a surgery to correct it. My family completely disagrres. The always get on me to get braces to straighten my teeth but when it comes to this surgery they tell me that I should not have to worry when there is other people who can’t do anything about what they have BUT I CAN so I feel I should take the oppurtunity. They tell me that I want to have it fixed in order to date. First off I am not interested in that right now that is the last thing on my mind. I can’t defend myself because I cannot make direct contact with people so they don’t respect me. I had surgery last year but it was undercorrected. Maybe that’s why they are against it. Life can be depressing with condition.

  7. Caroline,
    I just found this site and I wish I knew how to contact you. My daughter’s problem started when she was about 2 and i was told nothing could be done by 3 different doctors. She is older now and it seems to be getting worse. I need to find a doctor who can help her if it’s even possible at this point. I am going to post a message on a board I found and hope that someone can give some advice. Thanks for sharing your photos.

  8. Hi Motherof3,
    How old is your daughter now? What kind of doctor are you seeing for your daughter?

  9. My son had the surgery when he was 2 years old. He has done great for about a year. We have started noticing that it is turning out again and have been going to the eye doctor since he was 6 months old. My doctor now suggests doing the left eye in order to correct the right eye (which is the eye turning out). I trust him completely or I would never had let him operate on my son in the first place. I am however worried that if we do it again and it don’t work then what. I know that he can see better when it is straight and that he looks better but I am just worried. After finding your posts I feel better about doing it because all I could find earlier was about therapy and how you should do that first. But I think that surgery can help them then why not. I love my son and will do what ever I have to to make him better. THanks for your story.
    Jamie

  10. HI, I love your website. My daughter,who is getting ready to turn 5 years old, was diagnosed with extropia when she was just 1 year old. They immediately started putting a patch over the eye for such a long time but that never did work so they then decided to put her in glasses to see if that would make the bad eye come back in place with the good eye. I just took her back to the doctor today and she told me that my daughter is going to have to do the surgery because glasses is not helping her it is only making it worse. She is going to do the surgery in both eyes right from the get go. As a mother, I am so scared. I just cannot imagine taking my daughter to the hospital and just handing her over to the nurses. Everything is going through my head. Can you please email me to help ease my mind so that I can hopefully get this surgery over with. I really would appreciate it.

    Thanks!!!

  11. My daughter will be 3 in September and had eye surgery last October for Stabismus. Her left eye turns out more than the right. She also complains of it hurting especially when outside playing. She shuts that eye most of the time she is in direct sunlight. The Dr. did both eyes after patching didn’t seem to be helping. Here it is not quite a year later and it’s happening again. I’m so worried about her and afraid she is going to loose her vision in that eye. Any support would be greatly appreciated. Choosing the surgery seemed like the only option after learning she would eventually lose her vision if we didn’t do it, but now I’m wondering if it was the right thing to do? That was the hardest day of my life when the nurses took her out of my arms and off to surgery. We have an appoinment the 14th of July and I’m anxious. Also several months after the surgery her eyes started turning in instead of out. Anyone else have this happen to them?

  12. Our struggle began when my son was two years old. We first noticed that he covered one eye in bright sunlight and then we noticed that one eye was always red in pictures – a tell tale sign that the eyes are not aligned.
    We received opinions from 3 different doctors, followed instructions on patching the “good eye” as well as drops to try to strengthen the “bad eye”. Nothing seemed to change the fact that one eye turned in, exotropia. With this condition, we were told that Strabismus, or becoming blind in the “bad eye” can be a result of this condition and that surgery would rectify it. We were lead to believe that this surgery was a fairly simple procedure that is quite effective. In our case, the surgery resulted in what I feel is a much worse situation. My son’s eye now turned outward and upward after the surgery, a devistation. We then spent several thousand dollars on vision therapy for 6 months. This did not help. We sought out yet another doctor who we are currently working with. We patch 2 hours a night going on 4 months now. We are to visit the Doctor again in a month. If there is no change, he may try prism glasses. During our last visit, he told us that eye surgeons are now waiting as long as possible to do surgery and that in my son’s case, they would want to wait until he is about 12 years old. He is now almost 7. We question our decision to have that surgery and struggle with the decision of more surgery in the future. I personally would like to see this corrected before 12 years of age but surgery scares me due to our horrible first experience.
    My son is very bright and does well in school. He has many friends and is a very happy kid. He has always met every milestone but will not have anything to do with riding a bike. We were told that he may not have 3d vision or depth perception. This may explain the bike and the fact that he is a very “careful” kid.
    Our struggle continues..

  13. Hi, I am seventeen and I learned that I had exotropia at the age of twelve. I received glasses with a slight amount of prism in them, with no success. I have extreme migraines, very little depth perception, difficulty keeping my left eye (weak eye) open in sunlight, etc. I received new glasses at the age of sixteen with five times as much prism in each lens; my vision did not double, but I couldn’t even read. The prism was cut to 2 diops per lens. I can see to read, but my vision does still sometimes double.

    I still get intense migranes and have difficulty with sunlight. As I am now driving, I have had to fight to “estimate” depth perception, figuring out where stuff would logically be, a constant uphill battle. My eyes see colors differently, and my left eye is, in fact, going blind, at a surprising rate.

  14. hi all,

    Im a girl from philippines who needs advise very badly. I am already 27 years old and 1 mother of 1 year old baby. I am blind in my left eye (blind since birth). I never had a chance to visit an opthalmologist because my family is poor. I never has a chance to find out what happened to me. sometimes i blame my mom because she never see an opthalmologidt to find out what happened to me or if theres still a way to have my eye cured. (well I still cant blame her because we are really poor that time). I admire your story. For sure your kids will be grateful because you made a way to have their eyes fixed. I am just happy that my baby has healthy eyes.

    Now, i could say that I although I look like a taugh person, i still ahve plenty of insecurities inside because of my condition. I know ill be better if my eyes were normal. I have plenty of talents but I prefer to hide them because I am ashamed infromt of loads of people. I cannot even look other person straight into their eyes ( my left eye has cataracr as well it started to developed when I was 18 years old). My left eye is lazy ever since. Now that I am 27 and eventhough I am a mom, I am still loiking for a surgey (muscle construction) for cosmetic/aesthetic purpose only) i know for a fact taht my left eye will no longer see but I am somehow still hoping for it to be aligned. any one here gone through muscle eye surgery eventhough the eye is already blind? what are the risk?I badly needed advise.

    thanks

    lonelylady-

  15. Hi!

    Your sons are cute! Thank you for sharing your story. I think this blog will help parents.

    My daugthter was born 3 months premature. She was diagnosed with esotropia of the alternating kind.

    I patched 2 hours a day (alternating eyes) for over one year…then I was advised to only patch for about one day a week..

    I was advised that she would be a good candidate for surgery, but told that results could not be guaranteed…doctors believe they can cosmetically fix the eyes, but not the loss of depth perception they believe will or did occur. No one knows for sure. After much resesarch, we decided not to opt for the surgery…there were too many what ifs and not enough certainty. A year or more later I am still certain that I/we made the right choice.

    Surgery does not always produce the desired results and quite often creates additional problems…for some, like your cute son, the surgery works an is successfl, but for others the results are not so great!

    My daughers eyes are a beautiful light blue and I would just love them to be straight…she is constantly cross alternating or fixating her eyes so they appear crossed (one or both) at all times…which by the way is a good thing according to the doctors.

    In any event, there is nothing more than I want to have a daughter with cosmetically corrected eyes, but I am one of those who has opted not to take risks (very early on) and wait and see.

    Her eyes have become a topic of conversation…people are just curious/interested….but they just can’t stop smiling once my daughter says HI…which she does quite often…Kids are resilient and adapt quite well.

    I once went out with a very successful business man (many many years ago before the birth of my daughter) who had esotropia in one eye….(fixed if I can remember)….he asked me if I would still have found him nice looking or something if he did not wear a suit or I did not know he was successful…I found that question very interesting…and my answer was an honest yes….I would have liked him…
    Now, I realize that he had some hang up about his eyes. I TRULY DIDN’T! Didn’t bother me at all! I remember him having a beautiful eye color.

    I am so glad I had the opportunity to know him because it first makes me realize that people with huge visual impairments DO go on to leave full lives, EARN LOTS OF MONEY :), and are great people. More importantly,many parents make the decision not to have their children’s eyes surgically corrected…as I believe was his case!

    In any event, all of the people who are “curious” or “interested” can be intereste but what they should realize is that esotropia is not uncommon and can happen to just about anyone.

    Parents who opt for surgery are extremely brave and bold!

    I highly recommend lots of research before taking the plunge. Speak to several doctors, vision therapists and anyone you can possibly contact…you need the facts. Surgery offers permanent results.

    Good luck and God Bless You!

  16. I have been blogging on a sister support site. I wanted to share my story to at least say that I had strabismus surgery at 62 exactly one month ago today. I had strabismus surgery for esotropia in my right eye when I was 11 in France in 1957. My right eye drifted slowly out until I had severe exotropia. I must say that I was very apprehensive about it, particularly being put to sleep. My right eye was operated on without adjustable sutures and so far, I am very pleased with the results. It took this whole time before almost all the redness and eyelid puffiness are gone. For the first time in decades, I am able to look people straight in the eye and they looked back. I would hardly look any one in the eye (except family)and it bothered me a lot. If you have any questions about the procedure, I will be glad to answer them.
    George

  17. I have a squint on my right eye since i was born, my mother was scared to see a doctor bacause she taught the sugery can cause lost of eyesight. I am now 27, and a mother, i want to go for the sugery. Do you know any doctor any where in africa i can talk to.

    Gladys from Uganda

  18. Surgery for strabismus is one of the things medicine can do pretty well. Compared to say, back surgery which is a mixed bag.

    My suggestion: get copies of all your prior ophthalmology records. Esp. surgeon’s operating notes, a must for re-operations.

    Then go to the local medical school library and read a recent textbook on strabismus surgery. Google Books has a lot too for free. Fully understanding your condition is time-consuming, but will help you to advocate for yourself.

    Remember your surgeon will never care a tenth as much as you do about your eyes. Also, get a surgeon who did a fellowship in Pediatric Strabismus (even for adult patients), not a generalist. Not that everyone who did a fellowship is necessarily talented, but there are a finite number of surgeries that your eyes can tolerate. 3 is a lot. So why not get the best guy you can find to take the first crack?

  19. hi ,

    i am going through the same thing . my doc has advised to take my 5 year old for surgery. i am soooo scared and get all emotional when i think of handing over my baby to the nurses. did u’r daughter get the surgery done? Is she allright now? did she need multiple surgeries? please reply . how long did it take to heal ?

  20. Thanks to all for sharing opinions and experiences.I will share my problem too.I’m 20 years old now .I have a problem with my right eye,except I can’t see clearly with it also goes a little in right wich it tells me I have EXOTROPIA. I didn’t handle glasses as child so my right eye is LOST.Even though I lost my right eye , can see very well with my left.

    What I ask any of you is to help me in finding good doctors and tell me the risk of surgery

  21. Anton, there are links in the sidebar for finding a strabismus surgeon as well as a vision therapy doctor if you want to check that out first. I suggest, also, that you join our Eyes Apart email support group at Yahoo. You’ll find folks there who can share experiences and answer questions. Just click the purple Yahoo Groups! Join now graphic at the top center of this page. I wish you the best!
    Lois

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