Aug 26, 2009

What's Wrong With Her Eyes?

If I had a dollar for every time someone asked me "What's wrong with her eyes?" I'd be a very rich woman. I'm tired, so tired, of kids (and an occasional adult) asking me this question, commenting that she's falling asleep or asking if she's is blind. It is all too obvious that any time we are in public that even the people who don't ask are wondering the same thing. It gets tiring to have all eyes on you no matter how practiced you are at pretending not to notice. Thankfully right now Ainsley is unaware (I think) of people's questions and looks. But I don't know how much longer that will be. So I've been trying to get her ptosis surgically corrected but it's been quite a process.

Ainsley was born with congenital ptosis and we were told it would be corrected with a frontalis sling operation when she was 3 or 4 years old and she would have a normal appearance. At 9 months of age she went in for her second cranial reconstruction surgery for sagittal craniosynostosis and, sadly, her eyes were never the same. The ptosis went from moderate to severe and her eyes appeared much more slanted afterward. Perhaps due to the fact that she was missing her larger sphenoid wings and bone had to be constructed behind her eyes. We naively expected that she would come out of that surgery appearing "fixed" (after the recovery period of course). Yes, her head shape was more "normal" but the fact that we lost the ability to see (much of) her eyes was an unexpected and bitter pill to take. We had to do the surgery to give her brain enough space to grow so there was really no choice about it but I miss the way my girl looked before the surgery. Forehead and all. She was beautiful to me.

In life how we see everything is all about perspective. I thought the ptosis was bad before the surgery and looked anxiously toward to the day she was old enough to have it "fixed". Now I would give anything for it to be just like it was. I no longer have the hope that her eyes will ever look completely "normal" but it would be nice if they looked good enough that it's not the first thing people notice about her.

Ainsley's cranio-facial surgeon, who we highly respect, referred us to a new eye surgeon in January and he came up with a completely different surgical plan and asked to see her back in June to discuss timing of the surgery (which could have been as soon as this fall). Before I did that I wanted to pass this new plan by the original ophthalmologist and her cranio-facial surgeon and that process has taken a lot of time.

I have had this nagging feeling that part of Ainsley's problem may be that they made some massive changes to the shape of her forehead and brows (she had severe frontal bossing caused by the craniosynostosis) causing a laxity in skin and muscle as a lot of bone was moved around. When I pull her brow area forward a bit her eyes look more like they did pre-surgery. I'd shown this to the cranio-facial surgeon back in December and asked about the possibility of doing brow implants earlier than the anticipated 8 years of age but nothing came of it. Still I couldn't give up on this idea because it seemed to me like it should be possible to place eyebrow prosthetics before age 8 even if it meant redoing it again later if they became too small. My fear was that the eye surgeon would take out part of her eyelid muscle and then, at age 8 when the brow prosthetics were put in, her eyes would appear too open and maybe not even close properly.

Monday we finally saw the cranio-facial surgeon and went over all this. I was a bit nervous that I would be perceived as crazy. Especially since we had 3 additional doctors (teaching hospital)present. I was surprised to learn that yes he could do the brow prosthetic surgery at this age and it can be revised if needed at a later date. Not only that, he agreed that it should be done and in place before the eye surgery. He says that putting in the prosthetics may not have the same effect as pulling the brow forward with your fingers. It may, but it may not. The only way to know is to do it. The ophthalmologist felt that her eyelid muscles were irreversibly stretched due to the swelling from the cranio-facial surgery in which case you would not expect the brow implants to fix the problem. Still, it needs to be done to move forward with any surgery directly to the eyelid area. We shall see if it helps or not after the swelling and recovery.

I am feeling pretty good about this plan, I think this is the right thing to do. But of course I hate that she is going to need another surgery. He will go in through the same scar as before which means weird hair (they'll shave a band from ear to ear across her head) and the all too familiar zigzagged scar for awhile. Now we're just waiting for the call from scheduling since he's booked out about 3 months I expect it to happen some time in November or December unless we decide to avoid the hospital during cold and flu season and push it out until spring. But since she will also get the hip surgery and eye surgery next year we'd like to space the surgeries out a bit. I'm a little shocked that we've gone from no surgeries planned to 4 within the next year. We've done it before and I know we can do it again. Not to say it doesn't make me sad for all she'll have to go through. My poor little sweetie.

Here are some pictures so you can see how things changed. As always you can click on the pictures to view them larger.

Ainsley's natural position of her eyes (without using her forehead to lift) as they appeared the day before her second cranial surgery in July 2007.

Same day, Ainsley's eyes fully opened using her forehead to open them.

The height of swelling that caused damage to the eyelid muscles. She actually couldn't open her eyes at all for almost 2 weeks.

What the incision looks like about a month post-surgery.

Ainsley's eyes on her 1st birthday, almost 3 months post-surgery. This is pretty much how they look now when she is relaxed and not using her forehead to open them.


  1. Susan "people" I find can be very frustrating, enough that on some days it takes all my strength to venture out.

    I have said it before and I will say it again Ainsley is very beautiful to me and I really think she is a doll. Looking into those eyes through pictures I see the most magnificent set of deep brown eyes I perhaps have ever seen.


  2. I'm sorry that you have had to deal with the stares and rude comments. Your daughter is very cute!

  3. Susan,

    Boy can I relate to this post. Not in the looks of our girls (although I think they are both very beautiful) but in the whole reaching a decision process. Going back and forth and pushing the professionals to think out of the box a little. Fixing one problem, causing two more. Getting your hopes up, then being disappointed. Then picking yourself up to do it all over again. With a smile and good attitude. Finding happiness anyway.

    You're a good person and mom. You're going to teach Ainsley so many good, strong qualities that will get her through the tough times. Well, that's the little speech I give myself, too. Until they begin to realize they look a little different. Then I don't know what we'll do. I guess we'll think of something.

    Hang in there.

  4. (((((((((HUGS)))))))))
    It is hard to try to always wear a coat of armour!! Most the time I still guage whether we go somewhere is by whether I feel like I can handle the stares and comments or not. If I am likely to punch someone for their idiocy then we stay home!! I have really become a smart a$$ too, depending on who and how something is said. Hang in there, wish I could tell you it gets easier but my experience is it just becomes routine!
    BTW I think she is BEAUTIFUL!!! Screw everyone else!!! LOL