The Epilepsy Association of Calgary

On April 27^th, 1998, I came home from a morning grocery shopping trip at approximately 11:30 A.M. My aunt, who lives with me, helped put away the groceries and we proceeded to make lunch. A little after 12:00 noon, I began to worry about my son, David, because he hadn’t come upstairs for lunch. David was not attending school at this time so we expected him to sleep in. But, normally he came immediately to the kitchen after grocery shopping to see what had been purchased. This was what we expected from him, as he was fifteen years old.

I went downstairs calling his name out as I went. I received no response. It was at this time that the panic began to rise in the pit of my stomach. When I entered his room, I felt something was wrong. The way he looked was different. David was lying on his stomach with his face in the pillow. I grabbed his shoulders to shake him awake and that was when I felt the stiffness of his body. His shoulders were rock hard. My heart started to race as I felt David’s neck for a pulse. There was none, not there, or on his wrist. I screamed for my aunt to call 911 for help. Then I noticed the blue blotches on his face, hands, and feet. I pulled the pillow from under his face; there was a round bloodstain on it.

My head began to spin and the world seemed to slow down. The time it took for the paramedics to arrive seemed endless. When they came into the room and took one look at David, they knew he was gone. It was too late for anything to be done. They called the Medical Examiner’s Office and the Calgary City Police. When a child dies in Calgary, Alberta an autopsy is done to determine the cause of death and to determine if a further investigation is needed.

The police arrived first and awhile later the medical examiner entered our home. All of these professionals were very compassionate and the crisis counsellor from the Calgary City Police was called to support my aunt and myself through this tragedy. David’s older brother, Paul, was also contacted at his work. The crisis worker waited with me until Paul arrived at the house. Throughout all of these arrivals the coroner did her examination and determined that David did not die from suffocation as first suspected; the cause of death was the direct result of a seizure. This was confirmed by the postmortem inquiry.

This news came as a complete shock to the family and myself. David was not the only person in the extended family to experience seizures due to epilepsy. Three other family members have been diagnosed with epilepsy. None of these individuals, including David, had been counselled by medical professionals on the possibility of death as a direct result of a seizure. The doctors had only cautioned these individuals about the risk of accidents during a seizure. The recommendations were to take the prescribed anticonvulsants, maintain a healthy lifestyle, and have regular checkups with the doctor.

The information we later gained about Sudden Unexplained Death in Epilepsy Patients (S.U.D.E.P.) was through personal research methods, like the Internet, and other contacts with health professionals. We found that David’s death fit into this category because he was otherwise healthy before he died and, other than the seizure, there was no apparent cause for his untimely demise. Another reason why we were so shocked was that David’s epilepsy was never considered serious; he had only had four seizures in the five-year period since his diagnosis.

David’s death left me feeling betrayed by the medical professionals involved in his treatment, who never advised us or David of the risk of S.U.D.E.P. and the risk factors that might precipitate a lethal seizure. My feelings were so strong I sought legal advice to investigate the possibility of a lawsuit against these professionals. I was to find out that this could not be pursued in the provincial court system. It would have to be challenged in the Supreme Court of Canada, an extremely costly procedure. Lacking the funds to take the case to the Supreme Court, I knew I had to find another way to challenge the community standards of care for those with epilepsy. I have decided to raise the issue through increasing public awareness.

To this end, through my own research I have gathered information from journal articles, epilepsy organizations, and others affected by this syndrome. With the Epilepsy Association of Calgary’s assistance, I have developed a fact sheet on S.U.D.E.P. for public distribution. I am sharing my story to alert other people about S.U.D.E.P. in the hope that others may not have to suffer the loss of a child in this way.

We would like to extend our thanks to Donna for sharing her story and her pain with us. We can only imagine what a difficult journey this has been for her. We are indebted to her for having the courage it took for her to share her experience with our readers. We, of course, remember David as a younger boy, in attendance with Donna at some of our events, so active and full of life. To Donna, and all David’s family and friends, our hearts are with you as you continue to cope with this devastating loss.

We do hope to have the new SUDEP fact sheet available for distribution soon. With Donna’s help and initiative we are pleased to be able to educate other families who need to know this information. A few points are in order for the moment, however, because we know that parents worry about their children, especially when they have a condition such as epilepsy.

While SUDEP is a concern for anyone with epilepsy, it is the exception rather than the rule. It is estimated that SUDEP is responsible for approximately 12% of deaths in persons with epilepsy. Those aged 15-35 years appear to have the highest risk, and most studies report a higher incidence in males. We want to make sure that the risks are balanced against this reality, because we don’t want to see parents and family members worrying too much. SUDEP is a risk, and one to be aware of, but for most people, it is not too likely. Life is for living, so try to make the best of it!