People ask a lot about Noa's condition. It's difficult because she really doesn't have a condition that has one name - and most people haven't heard of a pre-natal stroke. On top of that, Noa's stroke was unusual because it was quite extensive and bi-lateral, meaning that both hemispheres (or sides) of the brain were affected. Often in a stroke (at any age), one hemisphere is affected and so one side compensates for the other. This is not the case for Noa. She has damage to the temporal, occipital and parietal lobes bilaterally.
Also, because Noa had her stroke before birth, it's not a matter of RE-learning things that were lost, as it is in adult strokes, it is a matter of learning for the first time. Luckily, the brain is very plastic, especially early in life so, for example, doctors looking at her MRI told us she was deaf because of damage to a certain area of her brain - but we didn't think she was deaf. We took her for hearing tests, and despite what the MRI indicated, she can hear. Her brain just figured out how to do that on its own.
But as the above example demonstrates, each brain is so individual, and the way it responds is so unique, that it's absolutely impossible for anyone to predict how a child like Noa will do. A child with the exact same brain pattern may very different issues (though there are no two alike, because every stroke is different) - and there is no way to predict the outcome. In fact, when Noa was first diagnosed, the doctor told that she might be a vegetable who would never be able to sit up - or she might be blind and otherwise normal - we just had to throw all the therapy at her that we could and see what stuck. And that is pretty much what we've been doing.
Here is a link to a pediatric stroke site that has some more background information:
http://www.pediatricstrokenetwork.com/
What does Noa “see”?
This is the other question I get a lot. Noa’s particular kind of blindness is called Cortical Vision Impairment (or CVI), and really its more about understanding than it is about seeing. Noa has some damage to the optic nerve (which carries visual impulses to the brain), but there are at least some visual impulses getting to her brain. We know this thanks to a horrid test that we’ll never do again.
The problem is that her brain cannot make sense of this information. I usually explain like standing too close to an Impressionist painting: it just doesn’t make any sense.
There is a great range within the world of CVI – some of these kids can understand quite a lot of what they see, some understand less. Often for kids like Noa, the visual information they are getting seems distracting for them so they avoid it. For example, Noa will look away from something as she reaches for it because looking at it distracts her from finding it. CVI kids also tend to shake their heads a lot because it’s easier to see an object in motion than it is to see something that is still.
There is no operation or cure for CVI – but there are some new therapies that we’re working with and that we have found very helpful. The key tool is a light box (like the ones we used to use to view slides back in the day). It is eliminating all the distractions that make understanding visual information difficult and asking the child to focus on one thing. Basically the idea is to train the brain to recognize certain colors, shapes, objects. This is a very slow process – and like everything else in the world of Noa, it is impossible to predict where it will take us. But it is having a positive impact in that Noa seems more aware of the space around and gets the idea that there might be some useful information coming in through her eyes.
It’s as fascinating, but complicated area. Here are some good links:
http://www.ohiolionseyeresearch.com/cortical_visual_impairment.htm
http://www.aph.org/cvi/define.html
http://www.aph.org/cvi/articles/morse_2.html
I wish I had some links with more information about the therapies we're doing, but it's just not really on the net at this point. If I find a link I'll post it....
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