The first time it happened, 35 years ago,  Bloggerman was two and a half years old.  He ran off with excitement at a fairground at a holiday camp and suddenly disappeared in the crowd..  Later we found that he had collapsed in front of the roundabout and the Fair man, thinking he was dead, in panic, 

 had picked up his body and ran to the first aid post. where they banged his chest and he came round.. 

I thought they were being dramatic and he’d just fainted, but it happened again a couple of years later  at a hotel swimming pool in Devon. A man had to dive in and pull him from the bottom.

At seven he started having swimming lessons, he continued to have these “episodes” at the pool, and of course they called an ambulance and he ended up in A&E. a couple of times.   I suspected they were not just normal faints but it wasn’t until one was witnessed by a paramedic at the school sports day,  who told me that the “faints” were not normal,  that we got referred to a Paediatrician, who, after some tests for epilepsy,  told me there was nothing wrong with him,  I was a “neurotic mother” and to go away and let my son live his life!

So I did……with the result that at eleven, he had a cardiac arrest in a swimming pool in Ryhl,… was resuscitated by paramedics and spent a night in hospital, .where they advised me to get my GP to refer him to a specialist.

  This was such a frightening experience,  I am trained in CPR and used to emergency situations, but face with somebody I loved who was not breathing and had no pulse, I completely
 went to pieces.  Thank goodness there was an ambulance sited outside…

My GP referred me to a paediatric neurologist  and cardiologist at the local children hospital.  After two days of tests they finally got a diagnosis.  I was not neurotic, there was something wrong with his heart, which I did not understand, . but the dilemma was, what kind of treatment should they use? So they sent him to a specialist sports laboratory to try to induce an episode under controlled conditions.  Poor Bloggerman was hooked up to a drip and an ECG,  with a rescus team and put on an ever increasing treadmill

By this time Bloggerman was twelve and puberty had hit, he was now a man/ boy and something had changed.  Unable to induce an episode, they decided not to fit a pacemaker or give him drugs with side effects and wait and see.

The episodes stopped and we ceased to worry, then when he was 16 he went to a Locum GP and happened to mentioned he played football , at which point the doctor told him he should not be playing football with his condition, and had his family been tested?

It was then explained that his problem was a little known, ( at the time,) genetic condition called Long QT syndrome, whereby the heartbeat has a slightly  abnormal pattern which, if the heart beats very fast, (for example, when you exercise or become angry or afraid,)  can change into an even more abnormal pattern, which can cause unconsciousness and death.  Classically, it is a cause of death for young fit healthy people who die for no apparent reason, often when they are active. known as Sudden Adult Death.

So we all had tests. It was found that myself and  my mother also had the condition. Bloggerman has inherited it from me! I felt so guilty.   It all made sense now.  The “fainting ” episodes I had over the years since I was a child usually associated with anxiety or phobias.  My mother on the other had was around 70 and never had an episode.  My mum  also had a brother who had died suddenly at the age of 19 for no apparent reason.

It is not an easy thing to accept, that you and your loved ones, have a potentially life threatening condition that could kill any of you at any moment and that you have passed this on to your children.

 My reaction was to avoid anything that might make my hear beat faster.  I was horrified that I had run, swam, used a gym etc, so all that stopped.  I walked away from conflict and even avoided sex!  I suppose I went into denial, because I wouldn’t take it any further and did not attend any  appointments with the cardiologist. Soon I got used to the idea that death could happen any time and that is when I began to live life for today, I resumed my activities and realised that you need to love the people you love while you can.

Eventually several years later , in my 50’s., I DID go back to the cardiologist and had more 24hour ECG tapes, scans  and stress tests,…. things had improved,   I had not had an episode for around 20 years so after a long discussion I decided to take my chances an not have treatment that may do more harm than good and affect the quality of my life.

Since then both my son and daughter have had two beautiful boys each. Bloggermans children have inherited the condition, my daughters boys have not.

Much more is known about Long QT these days. Mention it to any doctor and they know what you are taking about. ( my GP had to look it up when I went back for the cardiologist referral)  So far the boys are OK, no episodes and they see a cardiologist regularly.  Their parents however have the same dilemma, to treat or not to treat.  especially as they are developing children,  plus as they are now getting older and more independent it is difficult  not to be  overprotective.

At school, they had to have all sorts of paper care plans etc, but the school had only  one first aider, trained in CPR!  A wake up call that all teachers should be CPR trained.  After all there must be other children with this condition in the school as yet undiagnosed, CPR is something needed immediately… and what if the first aider is not available!

In March, a 24 year old,  Premier League Bolton footballer Fabrice Muamba, had a cardiac arrest in the middle of a game and was resuscitated on the pitch , on TV in front of thousands of fans.  His heart stopped for 78 minutes.  He had made a good recovery, but this week announced his retirement.  He was a lucky one.  It is estimated that 600 young people in the UK,  die every year as a result of Sudden Adult Death syndrome.  All they needed was a 24 hour ECG tape and a scan,  to screen them..

So the motto, “life is too short, life is for living!” becomes even more poignant!

Love Denise

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