A few weeks ago I met Jenny. It was a chance meeting that happened when I was lunching with a friend at a health club. We'd planned to take the babies swimming but it turned out the pool was closed to us at that time so we ended up idling the time away chatting over camomile tea and goats cheese salad in the cafe lounge instead…There was a little play area next to us where we popped the babies to play. Jenny was there with her young granddaughter waiting for her daughter to finish her workout.
We began to chat as we watched the babies play and naturally our focus of conversation became about our children. I learnt that Jenny had proudly raised four children. Jeremy was her third child and her only son. She talked fondly of him, of his life growing up and of his love of sport. As I listened, I imagined a strapping young man, full of life, heading for great success, such was her heartfelt description of her boy. I fleetingly imagined my own boys growing up and wondered what proud stories I would have to tell of them once they were grown, such is the strength of a mother's love for her sons…
I asked how old Jeremy was now…. It was an ordinary question, to which I imagined an ordinary answer, where I would then hear more lovingly told tales of what Jeremy was doing now with his life. The answer I received in its place floored me. With a look of sadness, Jenny told me with brave honesty, that Jeremy had died some 18 years ago quite unexpectedly and in a cruel twist of fate, on the very day she was to say goodbye to her eldest daughter as she drove her to start a new life at Oxford University. She arrived home from leaving her daughter, a heart wrenching 15 minutes after her beloved son passed away quietly in her next door neighbours garden, while sat with his friend.
It transpired that Jeremy had had a serious undetected, underlying, heart condition, that without warning took his life that tragic day. He was only 14 years old…Sadly though, Jeremy is not alone. Although still considered quite rare, every week at least 12 young people die suddenly from undiagnosed heart conditions, in the UK alone. A statistic that cannot be ignored. More young people are dying from undiagnosed heart problems each week than are dying from meningitis and yet what do we really know about the condition? We immunise against other diseases and illnesses but comparatively there seems to be a shortage of awareness on the subject of cardiac risk in our children.
I was so moved by Jenny's story that I asked her permission to write about it. I wanted to write about it, not simply to tear on parent's heartstrings as they read of this mother's unimaginable loss, but as a means of raising awareness on the subject, so that we may have a chance of recognising (the unlikely) but potential symptoms of an underlying heart condition in our own children. This is not about scaremongering. This is about hope.
It was then that Jenny told me of her involvement in the charity Cardiac Risk in the Young (CRY).
Cardiac Risk in the Young (CRY) was founded in 1995 to raise awareness of conditions that can lead to young sudden cardiac death (YSCD); or sudden death syndrome (SDS) - an umbrella term used for the many different causes of heart attacks in young people that can sometimes present as sudden death.
CRY initially promotes the heart screening of young people through ECG Testing Programmes and contributes to medical research. As well as providing an invaluable source of medical information the charity offers subsidised ECG and Echocardiogram screening to all young people between the ages of 14 and 35.
CRY also provides support to those who have suffered a loss through a network of affected families & counselling groups as well as donating medical equipment to surgeries and hospitals.
The charity has an impressive array of Patrons, from a variety of sporting, entertainment and medical backgrounds including David Walliams, Pixie Lott, Sir Steven Redgrave and Sir Ian Botham, all of whom are passionately supportive of the cause.
Following Jeremy's death Jenny and her husband Nigel, set up the Jeremy Cole Memorial Fund in conjunction with CRY. So far they have raised over £100k so that ECG (electro-cardiogram) machines could be purchased for use in the Eastbourne area of the UK to assist in detecting underlying cardiac abnormalities in a practical and highly effective way.
Cardiomyopathy is a disease of the heart muscle. It affects people of all ages and is mostly inherited. A parent could live their whole life without knowing they are carrying the disease and sadly pass it onto their children.
The condition is not curable but the good news is that when diagnosed correctly it can usually be treated successfully, with most of those affected going on to lead a long and full life.
It is difficult to believe that someone who is apparently young and fit may be at risk. However, there have been a number of reported incidents of misdiagnosis culminating in tragedy that could have been avoided.
Symptoms to Look out For
Some young people who have cardiomyopathy never have signs or symptoms. Others don't have signs or symptoms in the early stages of the disease.
CRY recommends that screening is requested via your GP if there have been any young sudden deaths in the family. Or if there are symptoms of:
- Chest Pain (exercise related)
- Severe Breathlessness
- Prolonged Dizziness
What can be done?
There is a simple way to diagnose most cardiac abnormalities. This is by having an ECG (electrocardiogram) test, the results of which, should be read by a cardiologist. For extra clarity an Echocardiogram (ultrasound scan) can also be done. An ECG test records the electrical signals from the heart, only takes a few minutes and does not hurt.
If detected at an early stage, cardiomyopathy can be controlled with long-term medication, the placement of a pace maker / defibrillator or surgery.
Research into sudden cardiac death has led the European Society of Cardiology (ESC 2005) and International Olympic Committee (IOC) to recommend cardiac screening for any young person taking part in competitive sport.
Sport itself does not lead to cardiac arrest, but can trigger a sudden death by aggravating an undetected cardiac abnormality. In countries such as Italy, screening participants in representative sports is mandatory. In some professions cardiac testing is also mandatory.
For further advice on ECG screening contact your GP or CRY directly for further information on how to get your child screened.
How you can help
CRY are doing all they can to help promote and protect the cardiac health of our young. However, we can also help raise further awareness on the subject of cardiac risk in young people by simply sharing this post with as many people as we are able.
If therefore, Jenny's story above (and many like hers) has touched you, then please click the share button below this post. By doing so, not only are we equipping families with knowledge of this condition, but between us all, this one simple gesture may just save a young person's life…