Thursday, March 25, 2010

I think it's time

I had planned in this post to share the recent baby shower I threw last weekend for my dear friend, and I still plan to do that, but something else came up today that really got me thinking.

I know many of the people that read this blog know that lil'bub had a very hard start to this life. And I have shared here before the variety of challenges we face from her multiple brain surgeries.

Some of you know the details, but most of you do not. That's because it's still hard for me today to say (or write) certain things out loud. But I think it's time. Right now. So here goes. My daughter had a hemispherectomy

Long, strange word huh? If you google it, most likely you will come across a definition like this: a surgical procedure where one cerebral hemisphere (half of the brain) is removed or disabled.

Some of you probably just gasped, or maybe your mouth is hanging in shock. At least, that's what I did when the doctor explained that this procedure was exactly what my one week old daughter needed in order to survive.

How is this possible, right? How exactly does one survive this surgery with any quality of life? All excellent questions that Avery's brain surgeon tried to explain to me in the simplest way possible: a genetic condition has caused massive abnormalities to the left side of her brain; everything is so mixed up over there that signals are crossed and she is having continual, uncontrollable seizures; however, the right side of her brain is normal, and the brains of children have optimal neuroplasticity, which means that neurons from the remaining hemisphere have the ability to take over tasks from the lost hemisphere.

Her surgeon also liked to remind us that "bad brain" is worse than "no brain." Shocking, I know. But strangely true if this "bad brain" is encroaching and/or causing problems to the good side. While still trying to process this information, we were told (as I have mentioned before) that this surgery had never been performed on a baby so little. The surgeon had consulted his colleagues from all around the country, and some abroad, and Avery was the youngest. This fact made him a little nervous, but he then explained (rather casually) that this was her only chance to survive. He said that if we waited any longer,  the overwhelming seizures would cause more damage to the good side, and there would be no hope of rehabilitation.

SO, when I talk about being given this choice of surgery, but not really having a choice, maybe it makes more sense now. We were told that it was life or death, so we jumped on the only option that gave us hope, and hung on for dear life.

This morning, I watched a story about a little girl that had the same surgery as Avery. This in itself was amazing, since it happens so rarely. The circumstances were a bit different--her uncontrollable seizures were caused by a different condition...she was MUCH older, around 6...and it was the opposite side of the brain that had abnormalities. But her outcome is exceptional. It's what we fight for, and what Avery fights for every single day.

Maybe you can watch this video and understand a little more about my sweet lil'bub. She still has miles to go, and continues to be the hardest working bub you will ever know, but this story gave me some inspiration, and maybe it will give you a little too.

Meet the girl with half a brain

1 comment :

  1. I saw the same story and it IS amazing! You guys have done wonderful things for Avery's life and I know she has done wonderful things for yours as well! Thanks for taking the time to put it on paper (internet) and explain. What an incredible journey to follow!


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