Mom of 2 sons with exotropia recommends strabismus surgery
Written on March 21, 2007 – | by Lois (admin)
–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.
I 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 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 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’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.
12 Responses to “Mom of 2 sons with exotropia recommends strabismus surgery”
By Kristina Wilson on Mar 21, 2007 | Reply
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
By Fabio on Mar 21, 2007 | Reply
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
By Elisabeth on Mar 22, 2007 | Reply
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
By Kelly H. on Mar 26, 2007 | Reply
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.
www.bjortandcompany.com
By VelvetVerbosity on Apr 1, 2007 | Reply
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.
By Antoinette on Apr 9, 2007 | Reply
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.
By Motherof3 on May 4, 2007 | Reply
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.
By Caroline on May 9, 2007 | Reply
Hi Motherof3,
How old is your daughter now? What kind of doctor are you seeing for your daughter?
By Trish on Jun 29, 2007 | Reply
Hello,
I was born in 1962 with esotropia. At the age of 2 I had eye surgury at the Kresge Eye Institute in Detroit, MI. The chief of staff was my Doctor. He must have over corrected my eyes because for most of my life I have had exotropia. In 1980 at age 18 I had eye surgury on both eyes (same Doctor) to correct the exetropia and at that time I was told I had some type of deteriorating eye disease which turned out to be the wrong diagnosis. Plain and simple, I had exetropia. I am now 45 and I still have exetropia.
The last Doctor I saw said my brain has determined that I have a dominate eye and as a result I won’t ever be able to see in 3D nor will my eyes ever be able to be corrected. I don’t believe that and I have discovered that there is a world renowned eye institute in Miami, FL, the Bascom Palmer Eye Institute.
I am interested to know who did your sons surgury, I may be able to get a referral.
If you would be willing to share that with me, I’d appreciate it.
I should add that I have always had 20/20 vision however, as far back as I can recall my eyes haven’t ever been straight. I have gained a great deal of inner strength as a result of the social discomfort but even today as a public speaker and consultant I make sure to address the issue of ‘who I’m acutally looking at’ up front in my presentations. I find it alleviates a great deal of distraction for the people I’m speaking to and instead of people judging the ‘unknown’ I can “see”
compassion instead.
As an adult living with exetropia, I would encourage parents to consider the surgery for their children as soon as it’s detected. Kids can be pretty harsh (unintentially) and anything out of the norm is usually a reason to get singled out and can be he cause for negative attention.
Trish
By Jamie on Aug 22, 2007 | Reply
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
By Stephanie on Sep 25, 2007 | Reply
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!!!
By Rach_l79 on Jul 4, 2008 | Reply
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?