Our son Matthew died in his sleep at the age of 26 from SUDEP.
The eldest of three children, Matthew and his brother were always healthy but our daughter was diagnosed with asthma by the age of three and there were many times we sat through the night with her as she struggled to breathe. We were very aware that children and adults could die from asthma and that attacks could be sudden and fatal. Despite this knowledge and anxiety we did what most parents do and we managed her illness as best we could. We learned about asthma and she had regular check ups. She never needed to go to hospital although it was very close at times. She leads a very active life and does almost everything she wants to do, due to knowledge and good management of her illness.
Matthew was diagnosed with epilepsy when he was 21. He had had some turns from age 18 but it was not clear then that it was epilepsy. When diagnosed he was referred to a specialist and we joined the local epilepsy association to gain more information. His doctor believed Matthew did not need medication initially and could better control the seizures by managing his lifestyle. This was to be reviewed and Matthew did modify his lifestyle to a degree. We read about epilepsy and the fear always with us was that he might have a seizure while driving a car, or injure himself during a seizure. SUDEP was not mentioned in the information we received.
At the time Matthew died he was still managing the triggers for his seizures without medication. To our knowledge his seizures had not increased - however he was 26 and living his own life in another city and it is possible he did not tell us. Like many young men he also disliked going to doctors.
The shock of Matthew’s death was overwhelming. We were so unprepared. We spoke with his doctor who could not remember discussing this with Matthew. His view was that it could raise people’s anxiety unnecessarily. However he said he would have answered any question Matthew might have asked. How can you get information if you do not know the question to ask? Matthew was an intelligent adult and very capable of making good decisions about his health. We will never know whether he had all the information he needed to make fully informed choices about managing his lifestyle or taking medication. It may not have prevented his death but as parents we would have felt he knew all that was necessary.
Another difficult thing is that epilepsy deaths are not discussed openly - it seems to be a taboo subject. There appears to be more SUDEP information available now but there is still a reluctance to discuss it in medical circles. Since Matthew’s death we have spoken with other bereaved families and their stories echo ours. This aspect is almost a denial of our tragedy and compounds the trauma and grief. Being heard and understood is such a basic human need when people are suffering.
Global Conversation 2005