What Happened To Her Eyes?

I've lost track of how many times people have asked me this question, "What Happened to Her Eyes?". Many times it's children who haven't learned to censor what they're thinking before it comes out their mouth. Adults inquire but in a less direct way, usually saying "Ahh, what a sleepy girl."  Either way it stings to know that the first thing people see is the difference of her eyes, even before they notice the trach. Because she isn't verbal I really don't know how much these comments affect her.  Sometimes I simply say "That's the way she was born." Although that's not the entire story.

In the past I've blogged a bit about Ainsley's eyes but I thought today I'd actually show you. As time has gone on I've become much more open about the things we've gone through, both the good and the bad because I hope that Ainsley's blog helps others: either because they are going through something similar or because people are inspired by all she's been through, her strength and spirit.   Perhaps sharing these photos will make it more clear why her eyes are the way they are. I'll have to warn you they are graphic.

Ainsley at 9 months of age, immediately before her 2nd cranial reconstruction, on 7/24/07. You can see a slight downward slant and her eyelids are a little droopy but not neither is too bad. At the time I actually thought perhaps her ptosis might get better after the reshaping of her forehead, which was bulging due to the craniosynostosis. I knew that her head shape would be different but I didn't expect her to look like a different person, mostly because of the change to her eyes. Sometimes I regret having the surgery but she needed it. The surgeons said that her brain "popped" when they opened her skull because it was under so much pressure due to the fusion of her sagital suture. Although sagital craniosynostosis is a surprisingly common condition her case was severe.

The scan of her skull before.You can see that her soft spot was larger than normal as the skull shape changed, trying to accommodate her growing brain as best it could. In addition you can see she was missing the larger wing of the sphenoid bone behind her eyes (which is practically unheard of ever) so the surgeon reconstructed that during the surgery as well otherwise her eyes would be resting against the dura.  He was able to split some pieces of bone in 2 so he was able to do the entire surgery using her own bone.

Her head shape post-surgery. The tube is a temporary drain to keep fluid and blood from building up on the brain post-surgery.

The height of swelling which may have caused stretching of the muscle that lifts the eyelid. 

The post surgery scan of her skull, after it was removed, split into pieces and reshaped by patching bone together using special absorable plates. Notice the brow above the eyes is reconstructed. It could also be that the repositioning of her brow area around the eyes that caused the change.  You can see that this was no simple surgery.  You have to give Ainsley's surgeon credit, what he did was amazing! The effect to her eyes was an unfortunate complication.

As you can see in this photo, taken 15 days later her eyes appear quite different. Of course she's still a cutie. At this time we thought perhaps there was some swelling (it can last up to 6 months) causing the change. It turned out not to be the case. We waited and hoped for improvement but it never came. She can use her brow to lift her upper lids at times, but it requires some effort and isn't a great long term solution. Although we know she can see, I do believe her vision is somewhat obscured by the droopy lids.

Similar to that surgery in 2007 the surgery being done tomorrow isn't a simple ptosis repair. The occuloplastic surgeon will make an incision at the eyelid crease, removal of some tissue from her upper lids which will then be transplanted into her lower lids to help bring them up. They will shorten the levator muscles that lift the lids and they will bring up the corners of the lower lids (canthopexy). There will be bruising and swelling so I'm not sure how long it will take for us to "see the final results". 

We appreciate your continued prayers and positive thoughts for a safe and effective surgery. We arrive tomorrow at 6:15, surgery will start around 7:30 and will take a couple hours since they are doing multiple things. Remember we are in the Pacific time zone. I will update as much as I can over the next few days.