Benjamin’s Vision

As you probably know, Ben is blind. We don’t say it in the blog outright like that very often, but that’s the situation. When people hear the word “blind” they often think 100% no vision, complete blackness. But most people who are blind have some light perception or can see outlines, shadows, etc. Legal blindness (in the US) is considered “central visual acuity of 20/200 or less in the better eye with the best possible correction, and/or a visual field of 20 degrees or less.”

So what can Ben see? People ask us this a lot. We don’t really know and we won’t until he can tell us. But because of the ROP his retinas are detached and while we might be able to get surgery to try to reattach them, he won’t ever see much at all. Right now he definitely has some light perception. You can see it when he is in very bright sunlight he will scrunch his face up. Also when using a light box Ben will sometimes reach for items placed on it (we think). If he has any vision at all it will be out of his right eye. His left eye is much worse. It had much more aggressive ROP disease and is much smaller than his right.

In order to help keep his bones growing the right way, and specifically the part around his eyes, we have been trying to get Ben to wear an ocular prosthesis. It’s like a very thick contact lens that is covers the whole front of the eye. When he’s wearing one his left eye looks more even in size but it’s not the most comfortable thing in the world. Ben is very good at getting them out. The longest he has kept one in is a week and a half. And believe me, it isn’t fun trying to get it back in. We are actually going to take a break on it and try again in the summer when going back and forth to the prosthetist is easier. It isn’t really necessary yet, but the earlier he gets used to it the better.

There has been something new we noticed though in Ben’s eyes… look at the photo below – what do you see (besides a tired baby who is still messy from dinner)?

Ben Red eye

Red eye (well a tiny little bit of it)! Red eye is the flash bouncing off the back of the eye and when your retinas are not attached or there are other issues in the eye you may not have red reflex at all. Ben never had any in the past that we noticed – but that little sliver of red is interesting. (Though note – we are not putting too much into this)

Anyhow, vision or no vision, Ben is fine, happy and healthy.

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8 thoughts on “Benjamin’s Vision

  1. I don’t think I have ever been so happy to see red eye before in my life! Fingers crossed for further development.

  2. I had a friend in college who was very blind; he got quite good at his This Is What It’s Like For Me Being Blind spiel, and would present it at dorms who wanted to educate their residents. He was a student at the conservatory; his compositions were too modern for me to tell if they were any good… but we took some dance classes together and it was interesting talking to him about what he thought his body movements conveyed compared to how I interpreted them.

    (Also, it was a little disturbing that it wasn’t until his sophomore/my junior year, while avoiding a truck that was backing up, that he was told/realized that loud and strident beeping sound meant “hey, a large vehicle with poor sight lines may be moving towards you.” he taught me a lot about taking visual cues for granted…)

    We all got very excited when another blind person– a young woman– moved into his dorm my senior year, but after dating a few times they decided that both of them being blind wasn’t sufficient to make a romance out of, and they just became good friends. 🙂

    Which isn’t exactly on point to this post, but… I like to make up stories about what my kids will do when they are older, so I thought I’d throw this out as fodder for your daydreams. :}

    • Thanks Alia – Tommy Edison is also a great for this type of stuff (what it’s like to be grown up and blind) I love his videos on YouTube. I will need to do a post on how cool he is soon

  3. Christmas Eve at your moms house I noticed he seemed to look toward the tree alot and I asked your mom if she thought Ben could see light or some forms. She thought the possibility was there and I pray everyday for him that things go the best possible way for him. He truly is a gift!

  4. Ben is so adorable. He is getting more and more handsome every time we see pictures. Thank you so much for renewing the posts. We look forward to seeing his remarkable progress.

  5. I know all about being excited for red eye! His retina must be partially attached and that is exciting news. Has he ever had a VEP? Visual Evoked Potential test?

    • No, we haven’t had that yet- I have to set up an appointment with our retinologist, I’ll ask him about it. Thanks.

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