Lisa Corke
The way my grandfather died was so unusual that it still lingers in the British psyche 37 years on. He was watching the infamous Battle of Ecky Thump episode of The Goodies [a 1970s BBC comedy show], laughing uproariously, when he collapsed and died. Doctors assumed he had had a massive heart attack and my grandmother was comforted that his final minutes were so happy. As far as we were concerned, the story ended there.
Decades later, his death has come to light again – this time because I nearly died four months ago. I was sitting talking to my husband, Mick, when I started to slur, then slumped over and began to wheeze strangely. Mick rang the emergency services and was told to start CPR [cardiopulmonary resuscitation]. The paramedics arrived and discovered that my heart had stopped.
I was rushed to hospital, but I had been clinically dead for 55 minutes and it was not looking good. My heart was restarted in the emergency room and my body temperature lowered with ice packs to boost recovery. The medical team warned my family that my chances of a full recovery were slim. If I did survive, I could be brain-damaged.
Incredibly, when I was brought round three days later, I was fine. I found it hard to grasp that I had nearly died – the whole incident seemed surreal. My family were more in shock; they had seen me dead and had been badly frightened.
The doctors wanted to understand why my heart should stop for no reason and started to investigate. They were particularly interested in my family history, and when they heard about my grandad's death they realised that it was likely we both suffered from long QT syndrome, an abnormality in the heart's electrical system that can suddenly cause it to stop. It can go undetected for years or, as in my grandfather's case, never be identified; people with it can just drop dead and you never know why.
Restart my heart
After the diagnosis, I had an operation to fit an ICD [implantable cardiac defibrillator] next to my heart to pace its beat and shock it if it should stop again. Having this safety net is a huge comfort – it has not needed to restart my heart since, but I have felt it regulate the pace.
The next step was to get to the bottom of why it happened. With long QT a variety of triggers can cause the heart to stop beating. One is feeling intense emotion – for my grandad, it seems the prolonged laughing fit was his trigger. Exercise and a sudden startle, such as jumping into cold water, can also be factors and when my parents heard this their blood ran cold – I swam competitively for my county during my teens, a sport that ticks two trigger boxes.
I feel lucky that I had a normal, lively childhood; it would have been miserable to have had to curtail my energy.
I will not know my exact trigger until the results of the genetic test come back in six months, and possibly not even then, which is slightly alarming because of the wide range of things it could be. I am supposed to avoid roller coasters, swimming alone and scuba diving.
I am not afraid to watch a scary movie or have a good cry, though, because the ICD will look after me, and although my life has had to change it also has to go on.
What concerns me more is that, because mine is an inherited condition, my daughters Ellie, aged three, and Amelie, nearly one, may also be affected. They have both had electrocardiograms to monitor their hearts and doctors think that Ellie may have the syndrome. She has been put on beta blockers, which will hopefully protect her.
I want her to be able to have a normal childhood, so we do not wrap her in cotton wool, but I watch her like a hawk when she plays on her trampoline or enters a race for her nursery's sports day. It is hard not to worry when a balloon pops at a children's party, though – could that be Ellie's trigger?
Having long QT in the family is scary, but in a bittersweet way I see what happened to my grandad as the start of protecting future generations. I find it very sad that he should have died without the correct diagnosis, but also grateful that his death pieced together the mystery of our family's condition. – © Guardian News & Media 2012