My daughter Kristen was diagnosed with epilepsy when she was nearly 15 years old. For ten years her epilepsy had been fairly well controlled with medication, having one or two seizures a year on average. That changed when she became pregnant. When her seizures became more frequent she was told that this was nothing to be alarmed about as this often happens during pregnancy.
Not only did her seizures become more frequent but they also occurred during sleep rather than during the day, which was the norm. This gave me a sense of security – at least she couldn’t hurt herself, or the baby, while having a seizure in bed. I couldn’t have been more wrong.
On the morning of July 2, 1999, Kristen got up to see her partner, Neil, off to work. Having worked until 10pm the night before she told Neil she was going back to bed. Neil was the last person to see her alive. When he returned from work that evening he found her dead in bed.
The news of her death was devastating. With no obvious signs of cause of death, her death was treated with suspicion. The next time I saw my daughter was on a mortuary slab. With her hair bound in a white sheet, Kristen was covered with a purple velvet cloth with gold fringes. The first thing I saw when I entered the room was her heavily pregnant belly; Kristen was 8 months pregnant. I could not touch her because of the circumstances of her sudden death. All I could see of her was her tiny blackened face, which I kissed when leaving. I withdrew quickly as she was as cold as marble. The memory of this day will stay with me forever. I sincerely hope no mother has to witness such a sight.
Six weeks later we learned that Kristen had died from epilepsy. How could she possibly just die? I did not know that having epilepsy could be fatal. Nobody warned me of the risks of SUDEP and now my daughter and grandson are lost forever.
Global Conversation 2005