We’ve never been sure exactly what Kai can see. It sounds crazy, really, but when you meet him it becomes pretty clear. He doesn’t meet your gaze. There is no eye contact. And it’s not like he’s aware of you and is actively avoiding your gaze, it’s that we think he can’t see all that well.
Cortical vision blindness, is what it’s called. Where there isn’t anything really wrong with his eyes, but something wrong with his brain. We knew this already – when we were in NICU we knew the toxic levels of glycine were already causing damage to his brain. The MRI was bittersweet. Structurally, all the parts where there. Unfortunately some parts had damage. Womp.
The older he gets the more clear it is. Kai doesn’t focus on things. And when he did start fixing on things, he didn’t follow them with his eyes if they moved. Or, maybe he does? The tricky thing is we know his hearing is bang on. If you make any kind of noise, he’ll turn his head towards you, and his eyes will seek you out. Our ophthalmologist thinks his ears are over compensating for his eyes. It’s crazy. So while we think he’s following with his eyes, he’s actually following with his ears.
Here’s what we do know – Kai can see light. If you flick a light on or off he reacts. So that’s nice. I’m pretty sure he can see movement, too.
But the rest of it? We don’t know really. But we do want to know, as does our neurologist and our ophthalmologist.
So we took Kai out to a fancy eye hospital in East London and had two eye tests done at the electrophysiology department. One was to check if his retina was detecting light (called an Electroretinogram, or ERG) and one was to see if his optic nerve was receiving any signals (called Visual Evoked Potential, or a VEP).
And this is all well and fine. Except that Kai had a seizure right before we walked in to the appointment. Poor little guy. Usually he’d sleep it off as his brain recovered. We’re lucky that the ERP could be done while he was asleep.
Awkwardly, it did mean I held his eyelids open for part of the test.
We had to wake him up for the second part of the test, the VEP. I felt so horrid, but it had taken forever for us to even get this appointment (I hate that I’m still quietly trying to justify it to myself now). So we woke him with a dance party – there were things stuck to his face and head and we kept him awake and flashed lights in his eyes. I can only imagine how terrible that was if all you want to do is sleep.
Le sigh. I was glad when we were done. It took a while for the results to come back, but long story short there is nothing wrong with his retinas. The VEP looks promising, but it’s hard to tell because the post-ictal stage interfered with how Kai’s brain was working and the readings they received.
So in a few months we’ll have to go back and do it again. Fingers crossed less seizures this time.