Madalynn Aurora Fellers was born on October 23rd 2007, 12 days late and a little on the small side at 6lbs 11oz. As far as we knew she was perfectly healthy and showed no signs of what was to come.
On January 28th 2008 Maddie had her first seizure. We didn't want to believe that's what it really was, but sure enough 3 days later she had a grand mal seizure and began to turn blue. We took her to the hospital in Bellingham where they did an CT scan, a spinal tap, and an EEG. The EEG showed seizure activity on the left frontal lobe and she was put on phenobarbital to try and stop the seizures. We left the hospital 3 days later and meet with her first neurologist Dr. Braun. He ordered a MRI at Children's Hospital on March 4th. That month was the longest of my life. I couldn't understand why my 4 month old baby was having seizures.
The results of the MRI came back with the worst news possible. She had hemimegalencephaly which meant that her left side of the brain was slightly larger then the right. This also meant that the structure of the left side had larger gyri and gray areas that were missing cortex. Her diagnosis was grim, mental retardation, severe developmentally delay, she wouldn't talk, possible not walk.
As of November 14th 2008 Madalynn has had a functional hemispherectomy. Which means the surgeons went in on the left hemishpere (called the non-functioning hemisphere) and took out a small piece to be able to reach the corpus callosum. This disconnects the communication between the two hemispheres, essentially this means that the left hemispere is no longer functioning. The only reason that the hemisphere was left in there was to keep the right hemisphere from moving. This will prevent the spread of seizures to the functional side of the brain.
Maddie has a 50 percent chance she'll be seizure-free. In many cases, especially in children, the remaining side of the brain takes over the tasks that were controlled by the section that was removed. This should improve Madalynn's functioning and quality of life, as well as reduce or eliminate the seizures. She still has to stay on the three seizure medications that she was on prior to surgery for at least a year. We'll be crossing our fingers for the next two years, if she stays seizure for two years then we should be home-free from there!
Madalynn is still just as happy as she has every been and is doing better then before the surgery. It's amazing! She has lost function in the right side of her body, but with her therapies she should get most of her functions back.