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Young Sudden Cardiac Death – everything a parent needs to know

Each year 600 families face the tragedy of losing a loved one to Young Sudden Cardiac Death. Because of an undiscovered, often hereditary condition, these otherwise healthy young people suffer a cardiac arrest and die. To help parents understand more about Young Sudden Cardiac Death and how screening can help, we spoke to Dr Steven Cox, the chief executive of charity Cardiac Risk in the Young (CRY).


What is Young Sudden Cardiac Death?

Dr Steven Cox: “Young Sudden Cardiac Death is when a fit and healthy young person who usually has had no symptoms has a cardiac arrest and dies suddenly.”

What causes Young Sudden Cardiac Death?

“The conditions that cause Young Sudden Cardiac Death are usually either congenital, the person has been born with them, or genetic conditions that have been inherited. Because often these are genetic conditions, it is very important if there has been a young sudden death in the family that the rest of the family, all first-degree blood relatives, are tested. Finally, there are some acquired conditions, such as myocarditis, that can also cause Young Sudden Cardiac Death.”

Are there any warning signs?

“In 20 per cent of young sudden deaths there are some warning signs, the red flags are exercise-related chest pain or exercise-related passing out. However, in 80 per cent of cases there are no warning signs at all, which is why we encourage parents to put their child forward for CRY’s free cardiac screening when their child turns 14.”

How does screening help?

“There are two main areas of conditions that we’re looking for. One is to do with the ion channelopathies, which means there is a problem with electricity in the heart. We can see those in an ECG test. The classic conditions are called Long QT or Brugada Syndrome. The challenge with these conditions is that, once a young person has died the electricity goes, so you can no longer see that electricity in the heart. So we can only make that diagnosis with 100 per cent certainty in life.

“Then there are structural conditions known as cardiomyopathies. These conditions have been known about for a bit longer than electrical conditions, so we have a better understanding of them. These are when there is a thickening of the heart muscle and that also affects the electricity of the heart. You can see these conditions on an ultrasound and an ECG.

“Those are the two main areas of conditions, although there is also Wolff-Parkinson-White syndrome, which affects at least one in 700 people. That is a condition that can be cured with an operation. Many athletes have had it and subsequently returned to sport at the highest level.”

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Why doesn’t CRY screen before the age of 14?

“The vast majority of sudden deaths occur after the pubertal spurt which is why CRY screens after the age of 14 years old. Before the age of 14 the heart is changing. So whilst conditions can be identified before then, we wait until the child has gone through that pubertal spurt and there are fewer changes in the heart. There are very few sudden deaths before the age of 14, but there can be a lot of false positives, a lot of abnormalities identified — we call them juvenile ECG patterns — meaning the young person has to then be tested regularly until they have gone through their growth spurt.”

How many people does Young Sudden Cardiac Death affect?

“For children under the age of 14 there are very few instances of sudden cardiac death. For people aged 35 and under, there are 12 young sudden deaths every week, which is around 600 every year. It’s one of the most common causes of death in young people after suicide and road traffic accidents. In fact, it’s the most common cause of death in young athletes.”

Why is that?

“About one in 300 people have an underlying cardiac condition that is potentially life-threatening. When you engage in sport, you are pushing your body to its limits, often on a daily basis. So if you have an underlying condition, the chance of then having a cardiac arrest is three to four times higher than with somebody who isn’t pushing their body to the same limits. This is why there is a focus on screening.”

“In Europe there are international guidelines that say anybody taking part in organised sport should have an ECG prior to participation. However, that message rarely gets pushed down to grass roots level. The vast majority of sudden deaths are among 14 to 18 years olds who are pushing themselves but aren’t quite at the level where they will be screened as a matter of course. So you do see deaths among the highest level of athletes but it’s very rare because it usually occurs as young athletes push themselves to reach that level.”

“In Italy, where it’s mandatory that anybody taking part in any kind of organised sport has to have an ECG, they have reduced instances of Young Sudden Cardiac Deaths by 89 per cent.”

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Can people still have an enjoyable way of life after diagnosis?

“Definitely. Sometimes these conditions can be controlled with medications. Sometimes they can be controlled by lifestyle. For example, there is one particular condition where you’d have to stop playing competitive sport. For some other conditions you may have to avoid certain drugs and medications. One of the conditions can be operated on and cured. So yes, there are a lot of things people with a diagnosis can do to very substantially reduce their risk of a cardiac arrest. And once you’ve been identified with one of these conditions the chance of suffering a cardiac arrest is very, very low.”

Finally, what advice would you give to parents?

“Once your child has reached the age of 14 we would recommend they come along to a CRY screening. It’s incredibly easy to do. Simply go to the www.testmyheart.org website. It’s completely free for anyone who wants screening. They’ll then have an ECG and consultation on the day, and an ultrasound as well if that’s required.

“To sign up just takes three clicks of a mouse on the website as long as there is availability. If a screening is booked up, people should register with us and we can tell them when we’re next in their area, or they can travel down to London where we have regular clinics every two weeks. We screened 23,000 people last year, about 10 per cent of whom were elite athletes.

“The powerful message from us is that exercise is incredibly important: it’s good for your mind, your body, and it’ll make you live longer. We are absolutely pro exercise. However, we also want to raise awareness that there are times when people do have cardiac abnormalities and exercise can exacerbate those problems. So it’s always important to know if there is an underlying issue.”

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