Jun 14, 2013

Ainsley's Eyes - A Six Year History

I think the thing people notice first about Ainsley (besides that she's cute and sweet) is that her eyes look different. The trach, the g-tube, the scars, being non-verbal, non-ambulatory (walking) all that gets less attention. People always wonder about the eyes. I can tell. And it's the first things kids ask about and that is a give-away. I have learned to try not to let it bother me and to keep my explanations short and simple (if I give any at all) because it otherwise it takes a lot of energy and makes me feel bad. But I will explain it here in depth because it really isn't as simple as "she was born that way."

Tomorrow marks one year since Ainsley had the third surgery to "fix" her eyes. It's been a long road. You can find more detail by reading past posts labeled ptosis. Here is the story in the smallest nutshell it will fit.

 Ainsley was born with mild to moderate ptosis (droopy eyelids).

When she was born she didn't open her eyes right away. For weeks it seemed, but now that I look back at pictures I can see she also spent a LOT of time sleeping. Which makes sense since babies do that, especially when they have a breathing tube down their throat and they are stuck unable to move, in a hospital crib. 
The top ophthalmologist at Children's checked her out and he said "Her eyes are fine, Mom"..."the disc to cup ratio is a bit high and blah-de-blah...." Basically, don't worry. What I didn't know is that this is the guy who sees the worst eye problems. So from his perspective if you can see things are good.
I was still worried. I knew her eyes should be more open than they were. (Picture at 1 month old.)
After the the tracheotomy was done she did open them more and I was relieved and yet they still weren't  as open as "normal".
But when she wanted to she used her brow to lift her eyelids higher and then her eyes looked fully open. The eye surgeon told us that a Frontalis Sling surgery would make it so her eyes would be fully open all the time and she would appear "normal". Sadly I looked forward to that, not knowing that I should treasure the 9 months I got to see her beautiful eyes this easily because things would get worse, much worse, not better...and in fact would never be this good ever again in her whole life.
Here are pictures so you can see for yourself, and see the progression as we get to where we are now 3 surgeries later.
Here she is at 3 months age before the 1st cranial surgery to the rear part of her skull.
4 months old after that surgery (hence the shaved head).
7 months old.
9 months old.
This photo of me watching her, taken the day before the fateful second cranial surgery, is very poignant. I actually believed she would come out of the surgery with her forehead and her eyes looking better. None of us knew that the reconstruction of her forehead, which was done to give her brain room to grow and fix the shape that was caused by the craniosysnostosis, would cause BIG problems.

She went from this.....

......to this overnight. She was 9 months old when this surgery was done.
Here she is the night before the surgery.

To be clear, her eyes weren't perfect before the surgery. Here in this picture she is relaxed and not using her brow at all to lift her lids. This is the amount of ptosis she was born with.
When she used the brow she could get more lift as you can see the difference from comparing this photo to the last.  Now we would be thrilled if she had this kind of function.
To be fair the surgeon (who is top in his field and amazing) Ainsley was a really complex case.
This is what he did.
See how the brow bone and front of her skull was cut apart and re-assembled into a new shape with lots of little pieces? He also replaced some bone that was behind her eyes. I'm not sure if he had to remove her eyeballs to do that. I probably don't want to know. But without it her eyes would be resting against the dura of her brain...which is not good. It was likely the repositioning of the bone that caused the eye appearance to change. And it's possible that the swelling damaged the muscles (though that depends on if you believe surgeon A or B).

Anyway, back to the eyes. Since pictures can lie, I thought I'd also post some video so you can see how her eyes worked before the surgery. Plus they are cute and fun to see this many years later.
Here she is sitting for the first time at 8 months age.
Here she is teething, age 7 months.
At our post surgery appointments we were told things could improve and to be patient.
A months later she's cute as a bug. But the eyes are still not opening as much, and appear downward slanted.
6 months later at age 15months, when she was smiling her eyes looked pretty much closed.
Using the brow they were better, but let's face it, not great. At this time she'd had hip surgery and is in a spica cast (the first one). Unfortunately this issue with the eyes is only 1 of many health issues.
I research options and talk to surgeons. And try to be patient for her eyes to improve, for her airway to get better and many other things.
Over two years pass and her eyes do not improve. There is a surgery that may help her but the ophalmological? eye surgeon thinks there isn't enough brow bone.
So in January 2010 at age 3 she has eyebrow prosthetics placed by the craniofacial surgeon. Not the hair. The bone. Fake bone, custom made to fit her skull implanted by cutting her scalp open and peeling back her forehead to surgically build up her brow bone. It did lift her lids a millimeter or two and created a solid foundation for future surgeries. We consulted back and forth between 3 different eye surgeons and got differing opinions. We asked for the craniofacial surgeon to weigh in, since it was the surgery he did that caused the problem. I hoped he might have insight into what caused and how to fix the problem. It the end we made a decision to do the Tarsal Switch Surgery where they removed part of the upper tarsus and placed it in her lower lid to help correct the slanting that was caused by the craniosynostosis repair. The idea is that it would also raise the upper lid position as well as prop up the lower lid and thus "kill two birds with one stone".
The surgeon came out of the OR and said he "also" removed some of the length of her eye, essentially shortening the opening of her eye. He removed 4-5 mm of length which in my opinion was too much and it created a pinched appearance. Since I wasn't expecting this I was quite upset about the loss of so many of her beautiful eyelashes. She was quite swollen and it was hard to see her so miserable. Again the doctor said "be patient" and so we waited hoping that it would get better.
One month post tarsal switch.
Two months post tarsal switch.
More than a year post tarsal switch. About that time things got better. We did find she could lift more than before but the starting lid position was clearly a problem. Her lids were so low that it took a lot of effort to raise them. So we decided to move forward with the Frontalis Sling Surgery.
This procedure was comparatively minor. They opened up the incisions from the past surgery and sewed donor tendon to the levator and then sewed that to the forehead muscles. This would allow her to use her brow to lift the eyelids and would also also raise the lid starting position. We watched and hoped for a miracle. What we got is slow gradual progress which you can see here.
This is really the end of the road for surgery. She does have a little extra eyelid skin which they may remove, but not until she is a teenager. So at this point we are done. At rest her eyelids are pretty closed. But close to a year post-surgery we started to find that she was using the sling more and more to lift her eyelids.
This photo was taken last weekend.
And I also have a recent video so you can see in action how she uses the sling to lift her lids.
There was a time that I felt the droopy lids were having a negative impact on her development. Even though they still look different we've come a long way. I hope she will some day use the slings to open the lids the way she did when she was a baby. But since her lids were surgically altered and her resting eyelid position is lower I know they will never look the same as they did before the surgery that caused the problem. She has started using the sling more and more and I feel like she must be able to see better because of it. Of course she has always been beautiful to us, always will be, and we love her more than words can describe.
That is the story of Ainsley's eyes and why they look the way they look.


  1. I have a child with autism and have been following your blog for years. I am sorry that I have never commented or said anything before. But please know that your hardwork is helping so many moms like me... I love reading about your life and your children and pray that they have a good life. your youngest is such a beauty..she has a special beauty and she is just simply beautiful. there! i said it three times... thank you.

  2. now that I have finally commented on your blog, I have officially broken the ice and am surely going to comment more often.

  3. Seriously. Your organization of media is nothing short of incredible. How in the world did you do this post? I am SUPER impressed.

    Big hugs, Susan. I know how difficult this particular part of the road has been for you. And I totally get it. You are a beautiful person, Susan and so is Ainsley. No doubt about it.

    Much love,
    Christy xo

  4. I was born with several eye conditions, one was the same as Ainslie's, my eyelids just never had muscles to move (open) I used my brow constantly as a baby/toddler, when I was 4, I had the first of 7 eye surgeries to correct the various issues with my eyes..
    The doctors took a piece of upper thigh tendon, from my right leg (scar is still visible) & made 'muscles' for each eyelid, now at 34, my right one is losing the 'muscle' it had, as it takes more effort to open that eyelid..
    I am legally blind, from the other eye conditions I have, (have been since birth) so it can be a bit of a frustration, but the right is my worst eye, so usually not a bother, unless trying to read a book, ( I have severe myopia, so i hold things close to my face)

  5. Hi there can I talk to you? My daughter has similar case...similar post surgery issues. I'm freaking out. I'd love to talk to you.

  6. Dear Anonymous, your comment was sent no-reply so I have no way to contact you. Please e-mail me directly using the e-mail address listed on the sidebar: ainsleyblog@comcast.net