by Christy Hollis
Nathan was born in August of 1997. It was a normal pregnancy and delivery and we went home at the normal time. Within three days of being home I noticed Nathan started to do these little things that look similar to hiccups, only I knew that something just wasn’t right. I took him to our pediatrician, whom I must say tried to brush us off saying it was a normal thing. I insisted that he send us to a neurologist and he did, I guess just to get us off of his back. My son was immediately put into the hospital, as his EEG looked horrible. He was having hundreds of seizures. At first all the mri’s came back normal, they couldn’t figure out what was going on. We were in and out of the hospital and were trying tons of medicines. Some would work for a short amount of time but none lasted long. Finally at 3 or 4 months of age, an MRI showed that something wasn’t right with the right part of his brain. No one could say for sure what it was, but only that something wasn’t right. Every couple of months we had an MRI to keep an eye on that part. We continued to try meds and diets, to no avail. We were told at one point that the gray area on his brain was caused by a genetic disorder, but then that was taken back and we were back to square one.
Finally at 11 months of age, we were at a crossroad. All medications had been exhausted and the seizures were doing nothing but getting worse. Our neurologist finally sent us to the Cleveland Clinic in Ohio, for them to do more tests. Alabama didn’t have the technology needed to get to the bottom of what exactly was wrong and if anything could be done about it. It was really our last hope. We went and within 3 days it was determined exactly what the gray area was on his brain and what could be done about it. Apparently that part of his brain didn’t develop right during the first trimester. He was a perfect candidate for a right hemispherectomy and he was scheduled for the following day. The surgery went great and we brought him home 2 weeks before his first birthday. That birthday for him was like the day he was born. Up until that point he was basically a drug baby. He started all over and began his life without seizures. He learned to walk at 3 and was potty trained at 5. He did go through therapy and all that during those first few years.
It has been 14 years and he is now 15! He was seizure free for 12 years but they did return in 2010. They are not bad and so far are being controlled with Klonipin. We are being told that some residual tissue has formed around the area of the surgery and that this is most likely the cause of the seizures returning. I know puberty can cause more seizures, so I am hoping that once we get through this things will die down. He truly is my miracle from above and it’s a miracle he is alive.
The Cleveland Clinic truly changed our lives forever and we will be forever grateful.