SUDEPSudden Death Unexplained Death In Epilepsy
question most frequently asked of us is " how did Gary die " and
it is with this in mind I write this page.
I am no expert on the subject but if I may offer advice in relation to living with Epilepsy it would be to seek expert medical advise and the services of trained nurses and councilors to help learn how best to become aware of your condition and in doing so lessen the risks associated. Information we found relevant can be found on the Internet, the address's can be found on our link page.
I think Christine and myself were typicial of most people when it came to know the meaning of SUDEP. We had never heard it mentioned until Gary died and even then it is not obvious. Sometime after Gary died we spoke to doctors about epilepsy and found the reluctance to acknowledge SUDEP.
SUDEP is an acronym of Sudden Unexplained Death In Epilepsy and up to quite recent years very little was known about SUDEP. We do know it's what caused Gary's passing and we read about it and asked questions to find some of the answers but sadly it still a mystery. With apparent limited research it is still not known exactly what causes it to happen.
Epilepsy Bereaved helped us come to some understanding of SUDEP. Epilepsy deaths come from many different accidents, or from status epilepticus, where a person suffers prolonged seizures, sometimes this type of seizure can become life threatening.
A person dies of SUDEP where a person with epilepsy dies suddenly and no other causes of death are revealed. The mystery that still surrounds it by the very nature of Epilepsy it is not a subject readily discussed. Most would see it as a hidden condition even though in the U.k. more than 300,000 are affected and official figures report about 1000 people die as a result of Epilepsy of these approximately 500 are as a result of SUDEP. In 1910 it was reported that 19% from a cohort of people with epilepsy were sudden and unexpected, and still today little is known why people die this way.
When Gary's death certificate came to us it had no mention of SUDEP and yet it is what causes the death of so many as we have come to know. The death recorded as pertaining to a history of Epilepsy sadly is what is usually recorded and accepted.
Our local paper did an article on Gary and how he passed. We agreed to this article because after three years we felt willing and able to highlight publicly how Gary died, to share our experience and to raise public awareness about SUDEP. Our message for parents of children who have suffered a seizure or seizures is to ask questions about every aspect of their child's illness and to ask that question we forget to ask "Can you die from epilepsy including the possibility of death by SUDEP ". We ask the medical professions to tell people the risks of SUDEP although small it should be disclosed. I know that this is a contentious issue but it need not be and should not be. From parents point of view who have lost a child through been spared any anxiety and worry about the condition of epilepsy is a price far to great to pay.
" If only we had known we would have made changes, we may not have been
able to save
Gary but at least he would not have died alone".
Perhaps one of the hardest thing's we had to accept as Gary's Mom and Dad was the sense " we had let our big boy down we were simply not there for him". Since talking with people from organizations such as " EPILEPSY BEREAVED", we have come to learn that in a lot of cases even with medical help a person can still die.
SUDEP continues to be made known very slowly for many reasons, doctors, carers, patients and their families encourage the idea that people with epilepsy can live full and independent lives, free of the unwarranted stigma. And yes that is the way it is for most. However only when all the facts are known and discussed can it be truthfully said that a person living with epilepsy are no longer living in the shadow of this condition.
We went into a lot of painful detail about the morning Christine found Gary and the aftermath of our struggle with grief. One of the issues for us when Gary died was the lack of any information we as parents of a child who had suffered a seizure were given. We were told a person can have one or two seizures and continue to live a normal life. I hope all doctors and medical staff who issue this type of statement correct it to include the possibility of SUDEP and if not the possibility the probability as supported by so much evidence. Again the answer offered to us is to spare parents any anxiety living with Epilespy, while we fully accept this arguement it nevertheless is not a good enough reason not to make known the facts. I have visited this page almost five yerars on. I know of one doctor who we encountered five years ago when Gary had his seizure we thought we had at least changed his attitude slightly but sadly I now know different,
As I write this piece it is National Epilepsy Week in England 18th to 20th May 2002. A memorial service was held today for all those who have passed it is with deep regrets we could not attend that service. Through our grief we have learned kindness and understanding from other parents who have lost their children through Epilepsy and it is with their help we have come to know what happened to Gary could not be helped. Gary died at the age of fourteen years on 22May 1999 and yet we feel he has achieved so much in such a short space of time. A Life such as Gary's cannot be measured in years but by the number of hearts he has touched. Gary still lives on in their hearts and he continues to still play an important role in all our lives. I have included in our links page further websites with information on Epilepsy and SUDEP.
It is only through discussion and highlighting the issue will more research will ever be done.
I wrote to many different professionals after Gary died. I recall one letter from a doctor in which the underlining message was although he offered his sympathy and "understanding" his real message was so long as not too many continue to die from SUDEP it's not too bad and he would prefer to spare us the anxiety of knowing the full facts. Perhaps I am being harsh on this individual but I have written this almost four years since Gary died and have time to think about it. How many more children must die before doctors such as this can be honest and let parents know all the facts. I speak from my own experience and how we found it. I can only tell it how it happened to Gary.
I have written over a thousand times Gary we miss you dearly and you shall never be forgotten for each person who dies there has to be a reason we shall continue that search. Gary's death has enriched our lives beyond measure however I would trade it all to have Gary back with us and to live life like before.