Baby Yarnworks has a slight visual impairment caused by a condition called nystagmus. Nystagmus is constant, involuntary, uncontrollable eye movements. This clip on YouTube, while of a flute lesson, shows Sir James Galway, whose eye movements are closer to Baby Yarnworks' eye movements than any of the nystagmus videos on the site. http://www.youtube.com/watch?v=NcXRzZZv1mE I plan to videotape BY's eye movements soon though, and I'll post that link when I do. Anyway, BY has a consultation with a surgical eye specialist on Tuesday to determine if she's a good candidate for surgery. This surgery will not cure nystagmus and may not even improve it at all (though some have seen noticeable improvements). The purpose of this surgery is to correct a head-tilt she has developed. BY sees best when she's looking down and to the left.
This may look like her just trying to be cute, but this tilted head position is something she uses often. She watches tv in that position, watches her sister play, and even looks at books with her head tilted a bit. Obviously we're worried about long-term neck issues and this surgery would address that. They'll remove the horizontal eye muscles from her eyes and reattach them in such a way that she can look straight ahead and get the same visual benefit that looking down and to the left currently gives her. Other than the normal risks of surgery (and anesthesia), this surgery is relatively low-risk and it's reported that vision never gets worse as a result....though sometimes it doesn't correct as much as we might like.
Considering doctors thought she might be legally blind as an infant, BY seems to see extremely well. She has some issues with stairs and running and such, but nothing like we expected. Only time will tell us if she has any more difficulty with her vision, but for now, she's doing just fine.
5 comments:
Wow -- that's still a bit scary, isn't it? Good luck with that!
Aw, I'm sorry she's having trouble seeing. I would think the head position may hurt her neck. Good luck with her surgery, I hope everything goes well.
And in the meantime, she's just the cutest little girl ever :)
I will keep BY in my prayers! She is simply precious!
My boys both have nystagmus. How did the surgery go?
The surgery went really well! We saw Dr. Suh in Des Moines. If I could go back in time with extra money for travel, etc., I would see Dr. Hertle instead. She still has a very slight head tilt and the Mommy in me always wonders if a doctor who was able to do eye movement recordings would have been more effective. But at the time we were broke and Dr. Hertle had disappeared (before reappearing later in a different state). I would absolutely do it again though. Her head tilt is tiny now and she has much better functional vision. She's even improved to 20/50 vision with correction. I think it was 20/70 before surgery and 20/50 six months later. This doesn't always happen, but was a nice bonus. I would NOT have done it for cosmetic reasons or just to try to gain her a line on the chart (unless she was borderline to drive or something...in which case it would be life-changing). If that makes sense? But we were genuinely concerned about neck/back problems if she continued to tilt her head that way all the time. The social, cosmetic, and improved vision were all bonuses. Feel free to email me at jlyarnworks [at] gmail.com if you have more questions or just want to chat.
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