Agenesis of the Corpus Callosum
When Suzanne was born I was told a variety of reason why she had a disability. My brother said it wsa gods punishment for my evil ways. my mother felt it was because I was lifting old people when I was I pregnant. Since I had had a difficult birth, I thought she recievved brain damage then. Basically we had no idea. It was just the way she was. I didn’t really care. Nothing could be done so what did it matter why.
Of course technology had moved since she was born and Waikato eventually got an MRI scanner. A scan was organised so they could have a good look at her brain. MRI’s are amazing but one of the most important things is, you have to keep still. Prue took her over to Waikato and told her that she needed to keep as still as possible so they would really get a good picture. I had my doubts but Suzanne stayed still enough and the pictures were brilliant.
And then we knew. Suzanne had agenesis of the corpus callosum. The corpus callosum is a thick band of nerve fibers that divides the cerebrum into left and right hemispheres. It connects the left and right sides of the brain. Suzanne didn’t have one. For some unexplained reason, it never developed. I remember looking at the scans, and it wasn’t there. I read up about it and some people have partial agenesis with few effects and they never know it unless they have an MRI.
It explained so many things especially the way she would look at her hands as if they didn’t belong to her, Because of the lack of connection between the two hemispheres she probably didn’t realise they were hers. It also explained the sensitivity of her face and her seizures.
I knew what was wrong. I could verbalise it and explain it to people when the curious asked, it was no longer a mystery. Agenesis of the corpus callosum. No one had every heard of it and few people knew what a corpus collasum is. But it didn’t matter. it was a diagnosis, And I told everyone.
I went to an IHC conference with a group from Tauranganot long afterwards. Mum came and looked after the house while I was away. My first conference. It was amazing. I met so many people. Bill Rowling was there and well as JB Monroe. I was totally buzzed out.
I went to lots of workshops including one on genetics. I wanted to know if Suzanne’s disability was connected to those of my sisters. When question time came I stood said that my daughter had just had an MRI and it was found that she had agenesis of the corpus callosum and I wondered if it could be related to a neurological condition or learning disability with epilepsy. The doctor said that it was probably just bad luck and sometimes members of the same family can have a lot of things wrong and it isn’t related at all, just bad luck.
After the session finished, a woman came up to me. Did you say Agenesis of the Corpus Callosum and I said yes. She said, my son has that. You are the first person I have ever met who has a child with that. Her son was older than Suzanne and his disability was not as severe. He was disagnosed years before in some kind of dye test long before MRI. We talked for ages like kindred spirits and we exchanged details and kept in touch for a long time. It was such a comfort to know there was someone else out there. This is long before Parent to Parent.
When I think about it now, I don’t know why it made a difference but it did. Perhaps it was just giving it a name.