Catherine's 23-year-old passed away from a condition Catherine had never heard of. As she contends with her grief, she wants others to know about sudden unexpected death in epilepsy.
Just over 17 months ago, my daughter Sam passed away. Her father, I and her two younger brothers had witnessed the unimaginable. She had died in her sleep. Who unexpectedly passes away in their sleep at 23 years of age?
Sudden unexpected death in epilepsy (SUDEP) is an acronym I had never laid eyes on until days after losing Sam. As I sat trawling through the web, frantically trying to make sense of what on earth could have happened, I stumbled across these five devastating letters. They would later be spoken by Sam’s neurologist and months down the track were written on the coroner’s report as the cause of death.
Sam, who used she or they with friends, but was happy to be referred to as she and daughter at home, had only been diagnosed with epilepsy about 20 months before passing away. I knew it would change her life, I didn’t know it could end it. Epilepsy made its appearance ever so quietly. Over a time spanning about six months it presented periodically, in a vague kind of way, until it demanded more attention. The subtle feelings of deja vu, confusion and a metallic taste in the mouth may sound all too familiar to those who have experience with epilepsy, but I had not. The realisation of what had been happening to Sam came on a Saturday morning. It was a morning just like any other, until she said, 'Mum I feel really nauseous all of a sudden'. A seizure followed, her body remained still, except for a strange lip smacking action. Her eyes stared blankly ahead. For two minutes she could not hear or see me. A second seizure was to follow just a couple of hours later, followed by a weekend in hospital, resulting in an official diagnoses of epilepsy. Sam’s neurologist talked us through what had happened and Sam was placed on medication.
After six months of being seizure free, Sam was permitted to drive once again. It seemed that the medication was working. Sam took to looking after herself. She kept fit with regular runs and weights, she hiked, she ate well and she always took her medication. Throughout this time, Sam was diligent in documenting all aspects that related to her health, which she would then report to her doctors at her regular check-ups. Nothing ever raised any cause for alarm.
Ten days before Sam passed away, it was flagged at her neurologist appointment that perhaps she was having nocturnal seizures. This was the first we had ever heard of nocturnal seizures, I never even knew they existed. The doctor would at some point organise a electroencephalogram (EEG) and a change in medication was to take place, but there was no apparent urgency. A script arrived in the mail and Sam (always the planner) discussed how she would change to the new drug on the Monday. She unexpectedly and devastatingly passed away at home in her sleep on the Friday night.
She had been so excited in the lead up to that weekend, where she had planned to catch up with some close friends for a walk, after Sydney had been in lockdown restrictions. Sam would never make it to that walk though. On the Friday afternoon after finishing another working week as a journalist for The Feed at SBS, she was in a delightful mood as we had dinner and watched a show together as a family. As she skipped across the room to reach for a chocolate from a box I had just opened, I never in my wildest dreams would have thought that that would be my last memory of my beautiful Sam. She would go to bed not much later to then never wake up again. It still feels so unbelievable.
The questions go on and on. What if, what if, what if? How devastatingly cruel SUDEP can be.
Like the pieces of a puzzle, I feel like I almost have the full picture, but it is too late. So now I am left with feelings of despair that I let my daughter down. Much is unknown about SUDEP and so perhaps nothing could have prevented it, but I know in my grief that I would like to think that I had given my all, my best shot at keeping Sam alive. Instead, I know that my heart will forever be heavy with the cruel words of 'what if?' What if Sam had started the new drug earlier? What if I had known of nocturnal seizures? What if I had recognised signs that may have indicated that she had had a nocturnal seizure? What if I had known about SUDEP? What if a Sudep Risk Assessment had been conducted by her doctors? What if we had been pointed in the direction of available educational resources? The questions go on and on. What if, what if, what if? How devastatingly cruel SUDEP can be.
Sam is not alone though. According to Epilepsy foundation Australia, SUDEP affects around 171 people every year, that is about 1.2 in 1000 people living with epilepsy. Epilepsy is the most common serious neurological condition in the world. Many of the families who lose a loved one to SUDEP, have never heard of it.
Behind these statistics though are real people, like Sam, and to lose them to SUDEP is tragic. Sam was a truly remarkable young person who had so much to live for and so much to offer to this world. Graduating as Dux of her high school she went on to study Government and International Relations and Political economy at Sydney University. She began her working life as a journalist at Junkee Media and finished it writing for SBS. She had an amazing mind. She loved life. Like many others though, she was taken way too soon.
Since losing Sam, several conversations have been had with me, from friends and acquaintances who had kept quiet about their experiences with epilepsy. It would be wonderful for the whispers to become conversations. I know that it is a terribly difficult subject and that it is not black and white. Whilst some might not want to have known about SUDEP, I wish with all my heart that I had. I wish too that I had been made aware of organisations like Epilepsy Foundation Australia and Epilepsy Action Australia. I have since learnt what wonderful educators they are. Offering not only valuable information but support for those living with epilepsy and their families.
It would be wonderful to see more funding going to research on Epilepsy and SUDEP, so that lives like Sam’s are not snatched away so cruelly. My hope is that SUDEP at some point can become a thing of the past, but until then, the conversation needs to be had. We need to talk about SUDEP.
October 23 is SUDEP Action Day - an international day supported by organisations across the world, including Epilepsy Action Australia, who join together to shine the light on the largest cause of death in people with epilepsy, helping empower people through increased awareness. Last year, Epilepsy Action Australia launched the first Australian SUDEP and Seizure Safety Checklist. This will improve knowledge and awareness of SUDEP and epilepsy mortality risk factors with clinicians and people living with epilepsy.