Trying to deal with SUDEP reaches into many aspects of human life. For ourselves the starting point was the overwhelming grief at the loss of our daughter. We were lucky to have some fantabulous family and friends to help us in our, and their grieving. Also in that grieving we made some new friends, people who, for whatever reason "got it" about how grieving for your son or daughter is way beyond anything other grieving.
Initially we knew nothing of SUDEP. We knew about Epilepsy, but not of SUDEP. For epilepsy though, because our daughter was 24 epilepsy management was largely her responsibility. She was an adult. She managed her own doctors appointments and her own medication.
Yes we encouraged her to get more appointments. However as a young woman travelling across Europe and beyond and later working in Dublin appointments were not easy to arrange. Also as an independently minded woman she took control and responsibility, and accepted little interference from ourselves or friends.
And then it was too late.
All we knew was our daughter had died very suddenly, very unexpectedly and in a situation that implied epilepsy was somehow the cause. It was not until nearly six months after the death, when the autopsy report arrived that we knew about SUDEP, though to be precise we began to suspect and read about SUDEP less than a month earlier.
So from that moment we began to try to understand the dimensions of SUDEP, and as with many things in life that story gets bigger and bigger.
The first was the added grief. Instead of simply grieving for the death of our daughter for a death we had kind of understood. It had been in the shower, and there was a report of bruising around the chest, which implied to us she had perhaps fallen awkwardly. That story now, whilst not turned on its head had the added angle of thinking this was a death actually due to epilepsy, rather than as consequence. That is Jane's death was due to the stopping of the heart and/or breath during an epileptic fit rather than, say a knock on the head.
And so questions expand. We never knew anyone could actually die of Epilepsy. No-one told us of that risk. That risk was hidden from us, either by ignorance or intention, even possibly intention to be "kind."
And if you look at some web information on SUDEP then you might conclude that our daughter was not at risk. We could easily have looked, before her death, and concluded "irrelevant".
At the bottom of everything, remember one common truth about epilepsy. When and how fits occur is almost totally unpredictable. When they occur is largely a random event. Even people on "good" medication (as was our daughter) could have a fit at any time. Not too far in recent history Jane had been entirely clear of fits.
So even had we known about SUDEP. Even had our daughter known about SUDEP. Even if she had been on a better medication regime. What if this and what if that. These are the questions a grieving family member lives with daily.
Even if... Then despite any protection our daughter could have died.
But equally it is also true she might not have died. She might still be living and enjoying a full life today. I feel like it is the toss of a coin. The balance of whether she recovered from that last fit, or did not possibly is a very fine line.
On the morning of 19th April at just after 9am she went into the shower as part of her morning routine to prepare for work. The fit happened some time in the next 30 mins. By 10.15am she was pronounced dead at the nearby St James hospital in Dublin.
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