We were so excited to be adding another member to our family. Steve was born on a very hot day in August, and I assumed all would go well as I never had any issues before. However, this time would be different. Although Steve needed some special attention when he was born, I was told all was OK , and we went happily home. I did not know what a tough year was ahead of me.
At three months, I decided one night to take Steve and my other two children to the mall for dinner as their father was in San Francisco on business. Steve had been napping awhile, and I decided to wake him up so I could feed and change him. I could not wake him! I panicked and called 911. They arrived immediately, grabbed him and put him in the ambulance. The police then offered to put me in the car and take me to the hospital. Neighbors were kind enough to offer to watch my other two children. The paramedics were able to revive Steve on the way to the hospital. Steve stayed there 10 days, and the doctors thought he had caught a bug, but could not really explain what happened or tell me how to prevent it from happening again. I did have to take Steve to the doctor every few days, though, to check his bloodwork.
Steve continued to be lethargic and would have a few episodes that looked like he was cold. One day when Steve was 7 months old was at the doctor’s office for his blood work, the doctor calmly told me to go across the street to the hospital as he wanted to check on something. I did as told and was met at the emergency door. Doctors quickly took Steve and tested him for spinal meningitis. He started having several seizures. I remember calling Steve’s dad and being so upset I could not even talk on the phone. Steve was in the hospital over two weeks as the doctors reviewed his case and stabilized him with medication.
Still all was not well. We tried every medication on the market, and nothing worked to stop the seizures. In fact Steve spend his second birthday going to the hospital for another stay. As nothing seemed to be working to control the seizures, we then went to medications that were brand new and not approved yet. Still he would have breakthroughs. I watched Steve miss fun childhood events that he had been looking forward to because he had had a seizure and slept for hours after the event. The seizures were becoming more frequent and pronounced. They were destroying his brain as they could not be controlled.
Finally at age 11 we decided to pursue a new surgery to stop the epilepsy – called Multiple Subpial Transections. Steve has to remain on medication the rest of his life, but there has been no more seizures. It was a very painful experience for him, but he was so thrilled to finally be able to enjoy a more normal life. Steve could finally be allowed to ride a bike! Walk to school on his own! Simple things we all take for granted.
We are so grateful to have Steve in our lives. Although he has a different life than his brothers and sister Steve has some gifts that are so special just for him.
