Mom Life

Heterochromia from Congenital Cataract

Many people ask me about Ava’s two different colored eyes. They think it’s really cool. Unfortunately, her heterocromia was due to having surgeries for congenital cataracts. Here is an update on her vision and scroll down to see a few pictures of her eyes.

Heterochromia eyes

 

Her visual history is a long story but here is the short(ish) version.

Ava had cataract surgery at 9 months. After that she started wearing a contact in her right eye. Don’t ask how we managed to put a contact in baby’s eye but we did it and so do thousands of other parents. We patched the good eye to strengthen the weak one, sometimes using arm bands to prevent her from ripping the patch off. At age two we realize the contact was the biggest pain in the ass of our lives and opted for an IOL. This is generally what old people get implanted after cataract surgery. We continued to patching for several years without success.



Now at 11 years old, she’s left completely blind in her right eye. For those that still don’t believe me, here’s a picture of the eye exam note

Illinois school eye exam photo

I don’t know what went wrong, as we’ve seen so many success stories in other children. I understand that things could be worse and many people don’t think it’s a big deal but it is. It is to me and it will be to her one day. One day when she goes to get her driver’s license, one day when she has to have another surgery, one day when she’s planning on having kids and wonders what are the odds her kid will have the same problem even though this is not hereditary.  People have told me “Well, at least it’s not cancer. At least it’s not both eyes. At least she can walk. etc..”  I get that, but I wish that people would’ve let me feel sad about her loss of vision rather than telling me everything is ok and she is perfect. Maybe if I would’ve grieved the loss of her vision properly instead of trying to blow it off like most people wanted me to do, I wouldn’t sit here in tears writing this, feeling like I failed her.

Yes, most days we forget there is a problem. But certain days when I see her playing I get nervous that she might fall the wrong way or that she’ll get hit in the face at soccer or that anyone will accidentally turn around and poke her in the eye causing her to be completely blind.  I’ve never let that fear consume my life and have never reminded her that she is visually impaired.  The only time we ever realize it is at the eye doctor when they ask her to read the letters on the chart with her right eye. She can’t even read any letter, not even the big E, in fact she can’t even see the chart at all.  She can’t see anything out of that eye until it’s inches from her face and even then it seems like she’s guessing what letter it is. That appointment and when I go to the 504 meeting at her school are really bad days for me.  During that meeting I have to tell the teacher or in this year’s case a set of 6 teachers and the principal that there is something wrong with my child and it breaks my heart to say it out loud. On the same note, it also makes me happy to hear such positive feedback about her, which is unsurprising because she really is a great kid.

Here’s a few more pictures of her eyes. they aren’t as extreme as some people’s. Most are taken by me but some are from modeling.

Pictures of heterochromia.

 

congenital cataract heterochromia

 

 

 

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