We often asked the question, what needs to happen to make Emma’s seizures go away? Death was not on our list of treatment options. From the moment we learned that Emma had died of a mysterious and fatal complication of epilepsy called Sudden Unexpected Death in Epilepsy (SUDEP), we began our quest for information. Our journey led us to people, organizations and resources throughout our community, the United States, Canada and Europe. We connected with other families who had lost loved ones to SUDEP; we talked to neurologists, nurses and social workers; we spent untold hours scouring the internet for as much information as could be found. The results of our search were disconcerting.
We learned that while SUDEP could happen to anyone with epilepsy, some people were known to be at higher risk than others. Not one of the legion of doctors, nurses or specialists involved in Emma’s care had ever talked to us about the possibility of SUDEP. Emma was at high risk, but we never knew. The realization was devastating.
We learned that there was much disagreement over how often SUDEP occurs because deaths due to SUDEP were not adequately tracked or reported. As a result, there was little evidence to support the medical community’s insistence that SUDEP is very rare. In addition, our increasing number of contacts with other families who had lost loved ones to SUDEP led us to believe that this happens to more people than was being asserted. It was also very troubling to realize the insufficient commitment to research into the cause and prevention of SUDEP.
The more information we found, the more overwhelmed, discouraged, and plagued with guilt we became. We don’t know if we could have prevented Emma’s death, but it was our right to be given all of the tools we needed to try. As we struggled to cope with the impact of all we had learned, our thoughts quickly turned to other families. We developed a rapidly growing sense of obligation. The veil of SUDEP secrecy had to be lifted; all patients and families had the right to full disclosure about SUDEP; medical community behavior needed to change; and research into the cause and prevention of SUDEP had to become a priority. Something had to be done. And suddenly, there it was…Emma’s legacy.