Our daughter Jane died from SUDEP & possibly from ours and her ignorance. Nearly half of all SUDEP deaths are avoidable. Stay Alive - Read On.

Saturday, 25 February 2012

About Jane's Life

We are so lucky to have known our daughter Jane Margaret Swarbrick. She died, aged 24 on 19th April 2011 after an epileptic fit.  Before that day we never knew epilepsy could be kill, except by consequential accident. This kind of death is called SUDEP (Sudden Unexplained Death from Epilepsy) and that is the cause of death stated on Jane’s autopsy report.


Born in 1986, Jane developed Petit Mal when aged 6, around 1993.  We were advised to stop her swimming and cycling, in case she had an accident as a consequence of Petit Mal.  These childhood absences disappeared when she was around 12 years old.  Later at about the age of 15, epilepsy returned and we were told that she would need to be on drugs to control the fits for the rest for her life.  And so Jane moved onto a drug regime which settled into a light dosage of Lamotragine (Lamactal).

Jane never let her epilepsy hold her back.  She struggled academically but more than made up for it in personal skills.  In an early job in a shop, the Hat Box in Oxord's Covered Market she showed herself reliably able run the shop on her own.  Later she worked for Zavvi Entertainment and was widely recognised by colleagues and customers as a very enthusiastic, reliable and informed source and commanded all aspects of their DVD & music retail department.  Her only problem was when opening the store in the morning her short height meant she had to ask passers-by for help unlocking the doors!

When Zavvi closed Jane took the opportunity to start her world travels.  She did this on her own and always travelled light.  We remember her reporting being stopped by Australian customs staff on arrival in Perth for carrying a mostly empty back-pack as her only baggage, and that for a stay of several months!  Later she worked on Organic Farms in Eastern Europe and mixed that with visiting several countries.  The country she loved the most was Romania, and the picture above is from her walking across the top of the Carpathian Mountains, what we think of as the roof of the world.

Latterly Jane opted to work in Ireland.  One day, September 2009, she simply announced she had booked a flight to Cork (because people she had met on travels had recommended it).  After two days in Cork she called and announced she had a job and accommodation and would be coming back for some belongings.  As Christmas approached that job dried up and she relocated to Dublin and quickly found a job she absolutely loved, working for ITSA, a cafe bar in the Museum of Modern Art.  Dublin was Jane’s final home.  Everyone around her seemed to love her, and she loved them.  She revelled in “The Craic” and...  Jane lived in Dublin for a year and a quarter.

Like many people with epilepsy, Jane initially had problems with her medication.  She eventually settled on Lamotragine.  On becoming an adult she took responsibility for her medication.  That was not easy for her.  Being a person who had mild epilepsy meant she did not easily take drugs seriously.  However after a couple of fits she became reliable and the fits stopped.  At one point I remember she was seizure-free for more than a year.  Perhaps, we thought the epilepsy is fading forever...

However the epilepsy came back.  Jane was generally reliable at taking her “meds”, her major problem was ensuring supply as she travelled.  As concerned parents we mailed new meds to her on more than one occasion from our reserves at home.

Nevertheless Jane was, in her latter days, not seizure-free.  We encouraged her to see her GP and get a review, and indeed she had done that, but we felt another review would be at least useful.  As an independent woman we did not know what happened but we encouraged Jane as much as we dared, without scaring her off!  Did we do enough?

Before Christmas Jane had a seizure, and then in March again she had another.  This last one was during her early morning shower, which had reminiscences of one she had in Australia.  We elected to go across to Dublin for the weekend and get her out of Dublin.  Jane set the agenda, and we went walking around Glendalough in the Wicklow hills.  All we can say is it was a sublime weekend, quite sublime.

We left Jane a happy woman and flew back to England, very happy ourselves.  The next morning our nightmare started.  Whatever had happened, happened quickly.  Around 9.30am a strange phone call came in from her brother, that Jane had been taken to hospital did not worry us unduly.  My wife made that call to the hospital.  I remember the scream as our world turned upside down.

We found out that Jane had died in the shower.   Later we were told their was some bruising to her chest.  The hospital staff and paramedics in Dublin did everything possible to resuscitate, all to know avail.  Jane was pronounced dead.  That was 19th April, 2011.

Had Jane still been alive we would have driven to Heathrow and caught any available flight.  Since that was not the case we decided that whatever we did we would do together.  That decision was one of the best we could ever make.  We drove to pick up our son and thence drove to catch the ferry to Ireland.  Our goal was to bring our daughter home for the last time.

We did not question the death.  We determined in our own mind it was Epilepsy-related.  How or why did not matter.  What mattered was we had lost our daughter suddenly and unexpectedly.  She has been ripped from our lives.

All the questions came into our minds.  Why, why, why.  A lot of soul-searching. Was Jane taking her tablets properly?  Should she have changed her tablets?  Should we have pusher her more to get an effective review?  Just some of the questions that will stay in our lives.

I won’t go into our mourning here.  Suffice it to say that it is clear to me that such a death could rip a family apart.  Instead it has brought us closer together.  Jane is in our hearts and will not be forgotten.  We have now largely completed our private mourning, ending with planting 24 trees at the end of October, 2011.

Since then we decided to raise funds for research into Epilepsy.  Whereas at the funeral we took an easy decision to ask for donations simply to go to Epilepsy Action, since that is something our son had been raising funds for for several years.  However now we decided we were going to make a major fundraising effort and so wanted to determine more focused, more relevant epilepsy projects.

And so just two weeks ago my search began. And then I read the term SUDEP on the website patient.co.uk.  My reading of it was that Sudep definitely did not apply to Jane.  Now I know that information was totally in error, bad information from an official government website.  And on the 7th December the official autopsy report came through verbally - SUDEP.

So now we have new questions.  Why did no one tell us about Sudep.  Did the UK’s NHS serve us well?  Are we at risk of blaming society for something that might have happened anyway?  Or worse are we, or Jane to blame?

My only answer right now is that ignorance is no answer.  I was ignorant of almost ANY risk of death due to epilepsy.  So was our daughter.  So was my wife.  So was our son.

Jane, as it turns out was high risk: a young adult, a global traveller, not seizure-free, childhood absences..  The list goes on.

We’re So Lucky!

Losing our daughter is our worst nightmare.  In recent years I have lost my parents, but they were in their 90’s and had lived full lives.  Losing Jane is something totally on a different scale.  We will love and miss her to the ends of our days.

However we consider ourselves lucky, indeed we consider ourselves very lucky.  This may seem strange when we have lost someone so dear to us. So why are we lucky?

By all accounts, Jane would have had a relatively painless and quick death - all she would have known is that yet another seizure was about to happen.
  • Jane lived life to the full, she never let epilepsy hold her back and travelled the world,
  • Jane was an inspiration to colleagues, family and friends alike,
  • Jane might have been a troubled teenager, but she grew out of that into a woman who knew her mind and lived by her principles,
  • Oh, and Jane was beautiful, in every sense.

I could go on and extend this list in many ways.  We have lost - but we have loved - and Jane will not be forgotten.

Our hugs go out to all who suffer from losing such a loved one.
Our efforts go to ensuring fewer and fewer people have to suffer.

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