Cayden had a tiny head. I mean really small. This in technical terms is microcephaly. Micro=small. Cephalic = head. That was a term I could understand, but we could not understand the implications quite so easily. His other brain diagnoses were not so easily understood or spoken, (& forget about spelling them for some time!)
Middle Inner Hemispheric Variant of Holoprosencephaly (MIH-V HPE)
Partial Agenesis of the Corpus Callosum. (P-ACC)
Small Frontal Lobe
Missing or underdeveloped central anterior veins
I know there were other brain issues at play, something about missing or small ganglia nuclei, but those even I never fully understood. But in simple laymen’s terms, his brain was not properly formed. Holoprosencephaly (HPE) is the condition where the hemispheres of the brain are not completely separated. His was actually the mildest form of HPE, and means that his middle of the brain it didn’t separate, while the front and back did. Agenesis of the Corpus Callosum is where the nerve center of the brain, does not form completely or at all. His was partially formed, thus the partial part. The Corpus Callosum is the part of the brain that allows the 2 hemispheres of the brain to speak to one another to allow most daily functions involved in speech and movement. Small Frontal Lobe was what they said. The frontal lobe is the front ‘rational’ part of the brain. It is where everyday thoughts are formed. Thoughts of self, of others. Basically, what makes you… you, what makes me…me. They believe this did not develop because of his missing central anterior veins, or vice versa. Without the brain, the veins are not necessary, without veins, the forebrain cannot grow. I believe that this was the reason for the most callous comment of the per-natal physician: “This child will never have a cognizant thought. This child will be a vegetable. This child will never know love, will never understand that you are his parents, that you are caring for him.” I took it to mean that without this brain section, he would be as good as brain dead. Try having that said to you 5 months into your first and long desired pregnancy.
It really was because of the lack of frontal lobe that his head overall was so tiny. So tiny that they pushed my due date back by 3 weeks because his head circumference was not normal. (No amount of reasoning that I was definitely pregnant before that time could make them change it again, even after the brain scans). And why they said I was delivering at 36 weeks when really, by my count, it was 39. It was why at 4 years old he wore 12 month size hats that covered his eyes. His brain was small front to back, and top to bottom. As he grew, his brain literally pushed forward into his forehead, making his face look more ‘normal’ and the back of his head became flat (from lying and sitting with a headrest all the time.)
Given all the book knowledge on what those parts of the brain do, I can see why doctors would give us a worst case scenario. (if you have clicked on my hyperlinks, you can also see what crazy vocabulary we had to learn! Those pages actually make sense to me!) But what they didn’t know, and didn’t take into account, is that our God is amazing. He created an amazing brain for an amazing boy. I loved watching his brain work. I used to say, “I can see the gears turning!” They just turned quite a bit slower than the average person’s gears. You could ask him a question, and he would sit, think, trying to move his hands & his arms… wait for it… wait…. wait… then finally… a little flicker of movement in his pointer finger, just a tiny flick, and that was his big response.
We learned that Cayden’s brain, his poorly separated, tiny, malformed brain, whose information highway was damaged and very small, with a cognitive part that was who knows where, just needed lots of time to process and send the signals that happen in microseconds for us. His brain was not a vegetable, it was more like a slug, super slow and steady. I could easily read his cues, his blinks, his twitches, but trying to get other caregivers and teachers to understand him was a huge challenge for me. Cayden’s brain became a fascination for me. I really wish we had had the time to do a brain mapping scan of how he processed things. Because he did process, he did know who he was, who we were, who his sister was, and what his dog’s name was. He was manipulative in crafty ways, just like any other kid. He could pout or whine or cry like the best spoiled child. Cayden didn’t drop to the floor & kick his legs (although if he would have I would have cheered!) but he would arch his back and yell and flail his arms if he was unhappy. And actually, not only did Cayden process well, but he was smart! By 3 years old, having been profoundly deaf for 2 years, he was on cognitive par with his peers. That is a huge achievement for any deaf child, let alone one with all the diagnoses he had.
Isaiah 64:8 (MSG)tells us: Still, God, You are our Father.
We’re the clay and you’re our potter:
All of us are what you made us.
Cayden’s magnificent brain was a testimony to me, to the amazing flexibility of God’s creation, and how a lump of clay can become beautiful in the hands of a gifted sculptor.
Tomorrow I will share about Cayden’s many other beautiful malformations.