Reality Smack – Or Why I Shouldn’t Look at Pictures of My Kid’s Brain

… more specifically, why I shouldn’t look at pictures of WHAT’S LEFT of Torran’s brain.

I do not believe parents should use name-calling to discipline their children. After today, even if I did, one thing I would never call Torran is brain-less. Why? Because it’s too close to the truth.
Bruce will probably scold me for Blogging tonight instead of dumping my angst into a mindless distracting activity. He is worried that I will obsess and drive my emotions down further. Hell, at least I’m not numbing my emotions with the “feels great but is bad for you food” we have. Then I could lose my gain on my weight loss (pun intended) and get doubly depressed!
Torran had a “routine” neurosurgery appointment today, although I always find it ironic to describe a meeting about the health of my child’s battered brain “routine”.
After waiting two hours for the neurosurgeon (past our scheduled appointment! – a slight dig at you know what kind of person) he came in saying Torran’s MRI was “fine”. His ventricles have come down nicely since the shunt revision surgery in January.
But my instincts told me, there’s something more to this image and he’s just not sharing it with me.
Now, let me paint a fair picture of our neurosurgeon. He is young, incredibly smart and has never sugar coated any of our interactions with us. Although he did not perform Torran’s last surgery, he came in to see us the next day to follow up on his recovery. We have never felt that Torran’s care was mis-managed by him in any way, even when he told me I didn`t need to make up signs for the nurses to handle Torran (infant) carefully when his brain was over-drained. And, most of all, we appreciate his frank honesty.
I can`t explain why, at that moment, I felt that he he was reserving some information. It is not that I was concerned, per se, that something was wrong, because I honestly believe he would have shared that with me had there been a problem to deal with.
Then I opened my big mouth and asked about the structure of Torran`s brain, given that Torran never had a baseline MRI previously (his shunt being magnetically programmable cannot be exposed to the MRI machine). Because, it made sense to me to to casually ask about the damage to his brain that they mentioned to me years ago from the intraventricular hemorrhage (IVH) when he was born.
Bleeding into the brain tissue in level 3 and 4 IVH causes the brain tissue to die. More irony. That red fluid which keeps us alive kills the organ which makes us function when they come into direct contact. For the neonate, the result of this bleeding into the brain tissue are cysts or fluid filled cavities into which the brain will not grow, causing a problem periventricular leukomalacia (PVL). In this disease, the white matter of the brain, the stuff which carries the messages to the functional parts of brain does not develop. Of course, it can have a whole host of symptoms and long term problems.
When we found out about it, I likened it to Torran having a swiss cheese brain. I thought his brain would look mostly solid with some holes. 
I was so very very wrong. The front part of Torran`s brain does look mostly solid…the back, not so much. My first impression: half of his brain is missing 
I am sure the neurosurgeon would set me straight about the actual percentage of missing brain, but there IS a significant portion of Torran`s white matter that has not developed and in this, the neurosurgeon did not appear pleased. The surgeon was very clear to say that Torran`s brain is smaller than it should be at this age, and his corpus collosum, a bundle of white matter fibres that chiefly makes both sides of the brain communicate with each other (among other things) is quite thinner than normal.
However, he is also very impressed that Torran can read, knows numbers, walks and interacts with others (albeit with his limitations) despite all of this. He said that it is attributable to the work Bruce and I have done with Torran. As always, I give credit to Torran. He did the work. We just brought it to him.
When asked what this means for Torran`s future, the neurosurgeon said that he has significant risk for learning disabilities and developmental problems (oh yeah, and seizures), but he couldn`t predict what that would look like. So, it`s back to Bloorview Holland we go to see our Developmental Paediatrician and talk about the neurological development of our son.
Yes, I have spent a good deal of time crying this evening. Bruce told me that we knew this information before, and nothing has changed. I know. But to see the picture… the graphic image that is so glaringly different from the interpretation I gleaned previously, made me nearly sick to my stomach. During the walk-through of the MRI, I had my hand in my pocket gripping myself to keep myself from expressing the horror I felt. All the way home on the TTC I kept Torran`s nose buried in games on the phone to stop myself from looking at him, and bursting forth with songs of praise in tears, as if that would make it all go away. But when I reached home, I failed.
And tomorrow, I will likely continue to fail to keep my composure, only this time, it will be the repressed anger combined with the anticipated grieving which will hit me. So I am taking a mental health day (forgive me Carrie) because otherwise I`d be reported several times for speaking my mind in a way that demerits the profession.
One little, searingly bright, light from the neurosurgeon shone forth during his grave message: “We are impressed with what he has achieved. But it is not enough. We want him to do more.” And to this medical phraseology of “We”, I could not agree more.