Paul died on April 18th 2007 at the age of 43 years. He left a devastated mother, siblings and nieces and nephews, all trying to make sense of how an apparently healthy man could die so suddenly and unexpectedly.
Paul was diagnosed with epilepsy at about 18 months of age. Despite his epilepsy and an associated learning disability Paul achieved beyond expectations, even becoming a medal winning barefoot water skier.
Like so many epilepsy sufferers, he had periods of being seizure free and dealt with the various side effects of many medications. In his adult life his seizures were fairly infrequent, only one every year or so. One month prior to his death he did experience a severe tonic-clonic seizure that saw him sustain severe bruising around his eyes. His seizures had always been quite violent and often nocturnal. They were noisy and he would be thrown from his bed.
On the morning of his death my then 77-year-old mother found Paul in his bed, lying face down. Despite my mother having an intercom connected to Paul’s room, she had heard nothing to indicate that Paul was having a seizure.
The family suspected that something other than a tonic-clonic seizure had claimed Paul’s life prematurely. I made contact with Paul’s General Practitioner and expressed our suspicions that this may have been a SUDEP. He very honestly acknowledged that he knew little about SUDEP but encouraged me to speak with the pathologist who performed the autopsy on Paul. Despite the pathologist being receptive to my concerns, his ego clearly did not take kindly to a non-professional attempting to educate him as to the possibility of Paul’s death being a SUDEP. He returned a finding that 'an unobserved nocturnal seizure contributed to the cause of death'. We repeatedly asked him to explain what, if anything, precluded him from returning a finding of SUDEP. He declined to do so.
This finding only served to add to Mum’s great distress, with the inference being that if someone had witnessed this ‘seizure’ Paul’s death could have been prevented. We felt that this was wrong and were determined that Paul’s death would be documented accurately.
We fought to have the finding reviewed by the State Coroner’s Office. During this process I was told by their representative that they had difficulty in finding a neurologist sufficiently qualified to give an expert opinion on Paul’s case. I was able to obtain such opinion from my son’s neurologist Professor Samuel Berkovic. He had also very kindly phoned my Mum following Paul’s death to reassure her that, despite the original finding, she should feel no blame. Mum still recalls this phone call with great appreciation.
Finally, some 14 months after the initial finding, we received notification that the cause of Paul’s death had been established as SUDEP. This lengthy process highlighted the great ignorance surrounding this phenomenon.
My son (Paul’s nephew) also suffers from epilepsy and I know that it would be Paul’s wish that we do all we can to educate professionals and families alike so that awareness of SUDEP continues to grow.
Global Conversation 2014