ERGs, Government Hospitals and Emergence from Woods.

So we had the ERG done. This involved my mom and I bundling Ariana into the Qashqai at 6am on a bitter Friday morning, and trekking through to Steve Biko Academic Hospital in Pretoria.  The obvious idiosyncrasies of public healthcare aside, it wasn't too bad. Yes we had to sit in a badly organised queue for an hour or two to register for a file. And yes this was hot and smelly and frustrating. But we weren't all together lost in the crowd, as before finishing, a voice came over the loudspeaker, "Will Baby Rahimi please report to EEG, with or without your file. The doctor is ready and waiting for you".

So off we went.

And it was all pretty arbitrary. For such a specialised test, there was very little razzle. We were taken into a little room, where my daughter's face was exfoliated to enhance electrical conduction (seriously). Small electrodes were then glued to strategic spots - just below her eyes, her ears, her forehead, and over where I imagine the occipital lobe of her brain is. These electrodes had wires coming off them that fed into something that looked like an old-time switchboard, and that, in turn, was connected to a computer. One eye was covered, and then something that reminded me of a miniature stadium light was placed across the open one, and, with the touch of a button, started to flash intense and rapid light into her eye. With each flash, a graph emerged on the computer screen, and when the technician was satisfied that she had enough footage, the same procedure unfolded on the "other eye".  Our own ophthalmologist who ordered this test told me, beforehand, not to expect "Speedy Gonzales" results, as there is only one professor in the country capable of ERG interpretation, and he's o-l-d. But the technician, who inspired much confidence, re-stressed this but also said the graphs look "fine", and that nothing untowards jumps off the screen at her.

I was already somewhat comforted by what I'd seen on her screen, as I'd read up quite a bit, and knew that "flat graphs" were the known enemy. Flat, as with all things medical, implies that nothing is happening. But Ariana's ERG had peaks and troughs and quite some action.

I snuck a peak at the referral letter, and saw that the Ophthalmologist felt, as I know, that Ariana's vision is abnormal, and wanted to rule out congenital retinal defects (which we seem now to have done, barring the said Professor's confirmation). In a sentence that read like manna from heaven, she suggested that "this may just be a case of Delayed Visual Maturation..."

This seems to make the most sense, NOW. As we all agree that this child's eyes almost palpably got "switched on" about 10 days ago, where previously the extent of her vision was anybody's guess.  I am MUCH more comfortable that she sees, and sees well, like any other child of her age. I would be extremely surprised if the doctors persist with the Cortical Visual Impairment reasoning, but I suspect that they'll drop it now. What remains is a conference with the Ophthalmologist, when she has the ERG report, and then a second-opinion appointment that we have scheduled with a doctor at the Donald Gordon Medical Centre (this at the request of our current doctor).

My feeling though, today, is that we're 3 metres from being out of the woods, and that the worst is most likely behind us. A month ago, there was most definitely a problem. Today, her eyes follow me around the room, watch the dogs and the TV, and her pupils clap shut in the sunlight...Her Pediatric Neurologist said that we should have faith in the incredible neuroplasticity of babies, and that this phenomenon, coupled with the roaring success of her Hypothermia Treatment, would probably render her "awesome". If I was an "8" on the CVI/Visual Impairment Worry Scale (my own formulation), a week ago, I'm probably at a "2" now.

And this is an overwhelming relief.