Rebecca: A Guardian Angel
While this is the patient story of Claire and Jamie, it is their guardian angel, Rebecca, who is the main character. Rebecca sadly passed away aged 14 following a cardiac arrest one morning before school. It was the tragic passing of Claire’s niece Rebecca which triggered the investigations and testing for the entire family, eventually leading to the discovery of Long QT Syndrome. The family is now in fact the largest family that St Bart’s hospital in London look after and monitor!
Looking retrospectively there is a long history of Long QT through the family. Both Claire’s grandad and dad died from heart related incidents, however, even when her father passed away in 1976, Long QT was not very well or widely known about. Other family members also sadly lost their lives due to sudden collapses, including their cousin Charlie aged 17.
In 2001 Claire herself was noticing palpitations and ended up in hospital very ill but the only thing doctors found were ectopic beats which were not deemed a cause for concern.
It sadly took the death of Rebecca in 2002 for any investigations into genetic conditions to take place.
Both Claire and Jamie refer to Rebecca as their guardian angel as without her they themselves may not be here. Jamie has in fact honoured his cousin’s life by using her name as the middle name of one of his own little girls. Jamie was only 16 when he was eventually diagnosed with Long QT and although he now has come to terms with his condition and tries to live a normal life, initially it was very difficult:
“I went through the full range of emotions, especially being so young. I felt anger, sorry for myself, but eventually I settled on feeling lucky. Rebecca didn’t even make it to my age, so I had to get through everything for her.”
One thing that has really helped Claire and Jamie is that they have been through their journey together, so they have always been able to share their feelings with each other. When Claire and Jamie had their ICDs implanted, they were in opposite beds on the ward!
St Bart’s Hospital where Claire and Jamie are looked after by their consultant Professor Lambiase
Claire struggles more living with Long QT than her son Jamie, and it does cause her a great deal of anxiety. Although is reassured by the fact she now has an ICD and is aware of her condition, she still lives in fear of the unknown.
Claire does feel there needs to be more support for people with Long QT Syndrome: “We were told we had Long QT, had our ICDs implanted and then were left to just get on with life. I felt kind of abandoned.”
It was this feeling that led Jamie to search for and join Long QT groups on Facebook and find comfort in the Long QT community. Neither Claire or Jamie still actually know their Long QT type and weren’t even aware of different types until talking to others online. They have genetically confirmed Long QT but are still in the dark regarding which type they have and triggers which may affect them. Jamie joked that his blood has travelled further around the world for testing than he has.
“Sharing our stories and talking about it helps us come to terms with it more. If my story helps one person, it’s worth sharing. We all have the same emotions even if we deal with them differently. It’s worth knowing that you’re not going through this journey alone, that someone else has been through it and someone else can be there to help you. Particularly younger people. I was only 16 when I was told I had Long QT Syndrome and I know how I felt and there were things I didn’t know how to deal with or process.”
Both Claire and Jamie are big football fans and support Tottenham Hotspur… which probably doesn’t do their hearts any good… although it also probably doesn’t get them racing either! (Sorry guys couldn’t resist).
Jamie has always been interested in football and prior to Rebecca dying was watched by Derby County FC scouts. Although he has no regrets where his football career may have gone will never be known. However, Jamie is simply grateful for the life he has now and feels lucky to be alive as he could have easily been a news story about a footballer collapsing in the middle of a game.
The Long Cutie 
Can I ask how much the book is. (I’m Rebecca’s mum)
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I don’t have a book yet, just doing individual patient stories but the plan is at some point to put some of my different pieces together into a book or something 🙂
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Keep me posted, sorry to harass you.. keep up the good work..
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