June 16, 2008
Today we met with Dr. Mathern, the neurosurgeon at UCLA, to discuss Aiden possibly having a brain surgery called hemispherectomy. Dr. Mathern explained that if Aiden doesn't have this surgery, the right side of his brain will progressively get worse. He will always battle seizures and need medication to control them; medication that inhibits his ability to learn and progress developmentally.
Since December, I've been researching this surgery and talking to parents of kids who've had hemispherectomies. I've been trying to prepare myself for this day because I knew I'd have to make this decision. I tried to come up with as many reasons as I could to convince myself that Aiden didn't need this surgery. But during the discussion with Dr. Mathern today, it hit me like a truck and I realized I have to give Aiden this opportunity for a better life. So, after considering the benefits and risks of this surgery, we decided to proceed. The surgery will be scheduled in late July or early August.
Dr. Mathern explained how this procedure will be performed. The right hemisphere is disconnected from the rest of the brain, but only a limited area of brain tissue will be removed. The surgery takes between eight to 10 hours. Aiden will need to stay in the hospital for 10 to 14 days. He will need intense rehabilitative therapy to regain his gross motor functions. He will lose sensation and fine motor functions on the left side of his body. On the plus side, the removal of the severely damaged brain tissue will better allow the healthy hemisphere to perform its duties. 80% of patients who undergo this surgery have complete seizure control without medication. I have heard from parents who say their child couldn't talk or walk before the surgery but were able to afterwards.
I am trying to focus on the possibility that this surgery will improve the quality of Aiden's life. My family and friends have been so supportive of my decision. The Sturge-Weber and Hemispherectomy support groups on Yahoo have helped me find the strength to make this decision. For that, I'm so thankful.
Thanks for listening and I will keep you posted when the date is set for the surgery.