Saturday, September 27, 2008

A New Mission

As you all know, this blog has been about celebrating Ben's life. But I feel that God is calling me to spread the word about how Ben died. Hopefully by telling his story, this can become a place for others to come for information about SUDEP, to find support as families cope with their loss, and to help raise funds for research in preventing SUDEP.

Ben was our 3rd child of 5 and our first son. He was the fussiest baby I had ever seen! But as he approached his first birthday, he became the child I will always remember. His love for life and others began to blossom. The tears were replaced with laughter and there was a mischievous twinkle in his eye.

Ben had his first seizure following a fever when he was 14 months old. I was holding him as I went to get the thermometer. All of a sudden, his little body stiffened and his eyes rolled back and he had a grand mal seizure in my arms. We rushed to the hospital where we were told this was a common thing in children with fevers and not to worry. But a week later, he was hospitalized with uncontrolled seizures. They ran many tests and put him on medication. After a year, he had had no seizures so the doctors decided to wean him off medication. For 9 months, he was seizure free and we all thought that he was fine. We celebrated Thanksgiving with my family and while there, he started having seizures again. Each one became longer and more severe and by the time we got him to the hospital, they were happening about every 30 minutes. Amid all the doctors coming in and asking questions, the doctor that stands out in my mind is the one who stood quietly by, and when it was only he and another doctor in the room, he walked over to Ben. Ben had been unconscious this whole time from medication. The doctor put his hand lightly on Ben's forehead and looked at him with such kind eyes. Then he looked at me and said "You are truly blessed to have this child."

Ben was diagnosed with epilepsy at age 3. His seizure activity was almost completely controlled by medication, and the few seizures he did have always happened when he was ill. The doctors had even told us that he would probably grow out of this and were considering stopping his medication. On Saturday August 11, 2007, Ben woke up early. He and his 7 month old brother sat quietly in my room playing together. I remember just watching them play, imagining all the fun these two brothers would enjoy together. As the other children woke up, I got busy with the morning routine. Around 9:00 Ben came to me and said he had a headache. The other children had all had colds recently, so I figured he was next. I gave him some medicine for his headache and he asked if he could lie down. After Ben went to bed, the piano tuner showed up to fix the piano. When he left I went to check on Ben. I called out his name as I walked up the stairs, but he did not reply. I had this horrible feeling overcome me and I quickened my steps. As I entered his room, I screamed. My little boy was dead.

No one ever told us you could die from epilepsy.

We now know that Ben died from SUDEP. Sudden Unexpected Death in Epileptic Patients. Right after Ben died, I tried looking up SUDEP. There is very little to be found on the internet or elsewhere. Even our neurologist could not tell us any more than we had already found on our own.

This has completely changed our family and we will never be that family again. There is a huge hole in my heart and in our family. I was amazed by how many lives Ben had touched in his 7 years. As we try and move forward, I still want him to be a part of how we live. Hopefully Ben will smile down on us as we try to reach out and offer a helping hand.