Violet's Story

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Our daughter, Violet, was born blind.  

She's fortunate to live in Seattle, where we live 20 minutes from the office of one of the world's foremost experts on treating her cause of blindness. What a blessing it is to live in a time when the technology, know-how, and experts can rebuild a child's eyes so they can see. 

She is lucky.  

She didn’t pick to be blind. And she didn’t pick who she’d be born to or where she would be born.  If she had been born somewhere else, she would likely be part of the 80% of blindness that is treatable or preventable.

At Violet’s 2 month check up, her doctor finished the exam and asked us to wait for one of the other doctors to come in and look at her eyes. She didn’t think it was anything huge, just wanted to have someone else offer input.  At the end of the appointment, they said Violet wasn’t showing any “red reflex” in either eye and we needed to see a pediatric ophthalmologist.  They reassured us that it could be caused by immature eyes.  However, it could also be a sign of congenital cataracts.

 

Total Bilateral Congenital Cataracts

A congenital cataract is very similar to a cataract in an older person, the main difference is that you are born with it. Congenital cataracts range from very small and less significant to completely blocking all vision. Some have it in one eye, some have it in both. Violet had bilateral cataracts, in both eyes, and they were the entirety of the lenses. The best explanation I can offer is that most people have clear lenses in their eyes, hers were completely white.  

She couldn’t see anything at all.

I remember taking her to see the first ophthalmologist. I  sat in the chair holding up my two month old so the doctor could look at her eyes through all of the crazy lenses he had. I remember him leaving the room, and finally coming back to tell me her diagnosis. She had bilateral congenital cataracts and would need eye surgery as soon as possible. He didn’t perform that surgery anymore but had called a colleague who did.  And who happened to be basically the very best at treating this.  But we needed to get in right away.

Violet has had two eye surgeries thus far.  The first one to remove the lenses in her eyes and replace them with artificial ones.  The second was to repair/clean up some scar tissue that had formed.  She also developed another condition called Nystagmus.  This makes her eyes move back and forth really quickly.  She now wears little purple (of course, right?) glasses that help her vision and help control the Nystagmus.  We also visit her eye doctor about every 6 months.  She’s a happy, healthy, energetic little girl.  

Looking back, I remember so distinctly sitting in her room one night, rocking her to sleep, thinking about how on earth I was going to raise a blind child.  I had never even broken a bone as a kid.  I didn’t know the first thing about any kind of special need.  But because of where I lived, and because of the medical professionals I had already seen, and how they had reacted to this, I also knew the reality was that we would have hurdles, but overall, Violet would be able to have some kind of vision.  I think about moms in other countries, or even other places in the US that might not have the same resources.  Even if Violet hadn’t been able to have surgery, I still would have had access to all kinds of resources that most aren’t afforded.  And nothing that I did, or that Violet did led to the fact that she got the opportunity to see.

It doesn’t seem right that we had that chance and others don’t.  Why not try to help others get those same chances?  We would love to hear from you if have any interest in helping us give more kids the gift of sight!

    

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