In the UK, it is estimated that around 600 young people under the age of 35 die each year from undiagnosed heart conditions, many of which are attributed to sudden arrhythmic death syndrome, or SADS.

SADS is when someone dies suddenly from a cardiac arrest with no obvious reason for it. Whilst heart attacks are a plumbing problem caused by blocked arteries, SADS is linked to electrical problems in the heart, often caused by inherited heart conditions. It can take the lives of young, seemingly healthy people with no prior symptoms, leaving families shocked and devastated.

Myles’ story

Myles was a happy, healthy 15-year-old boy when he died after suffering a sudden cardiac arrest at home in his bedroom. Tragically, the cardiac arrest in 2023 happened on the same day, and in the same way that SADS had killed his father 8 years before.

Myles was rushed to hospital but couldn’t be saved, leaving his devastated family searching for answers. His mother, Hayley, who was the first to discover Myles on the floor of his room, spoke to reporter Jonathan Gibson as part of our upcoming programme, In a Heartbeat, to share her story and help raise awareness.

“I felt like there was something wrong with his heart because they both went into cardiac arrest the same way, the same day. Was there something wrong? Is there something that they’ve missed? Is there something that wasn’t picked up, but there were just no answers,” Hayley says in the film.

“He had a healthy heart. No indications, nothing was found. It’s really difficult, but I just have to keep going and just know that Myles is with me. And he’s never going to leave me.”

Hayley, Myles’ mother, has dealt with the double tragedy of losing both her husband and son to sudden cardiac arrest.

One of the significant challenges with SADS is the lack of symptoms before cardiac arrest occurs.

“It can just happen, and with sudden arrhythmic death syndrome, it is indiscriminate,” explains Ruth Goss, a Cardiac Nurse at the British Heart Foundation. “It is devastating for all those affected by it, as they could be healthy, young, and with no risk factors. That’s why it’s so important that we are trying to understand why it’s happening in the absence of any sort of cause or reasoning behind it.”

Research funded by BHF aims to reduce the number of families going through the unimaginable grief of losing a child to SADS. Professor Elijah Behr of St George’s, University of London, is a lead researcher in arrhythmias and the causes and mechanisms underlying SADS.

“When we first started doing research — and I started this back in 1999 — we didn’t know the underlying causes, and now we’re at a point where we have an understanding of around half of cases. We’re understanding more as we undertake further research, including trying to understand how important the genetic risk is for family members.”

The impact of SADS on families and communities in the UK is profound. Around 12 people under 35 die every week from an undiagnosed heart condition in the UK. Many of these deaths could be prevented if the conditions are detected early and managed properly.

COMING SOON: This World Heart Day, 29th September 2024, ITN Business and British Heart Foundation are launching In a Heartbeat, hosted by broadcaster and journalist Louise Minchin. 

Despite advances in medical research and technology, the sudden and unpredictable nature of SADS highlights the critical need for further investment into research as to why this happens, and how we can support those affected by it.

Regular heart screenings, especially for those with a family history of heart problems, could be lifesaving. These screenings can detect abnormalities in heart rhythm and potentially prevent a tragedy. Families who are directly affected by SADs are currently offered screening for heart conditions to reduce the risk of it happening again.

BHF is not funded by the government, as Ruth explains; it’s the public’s generous donations that help power lifesaving research — and raising awareness of these conditions and urging people to donate will help save lives.

Proactive heart health screening.

Proactive heart health screening is encouraged for those with a family history of unexplained deaths or fainting episodes.

The importance of CPR training

In the UK, less than 1 in 10 people survive an out-of-hospital cardiac arrest. But with earlier use of CPR, many more lives could be saved. This is where people’s knowledge of and ability to perform cardiopulmonary resuscitation (CPR) becomes crucial.

According to the BHF, the chance of survival from a cardiac arrest decreases by up to 10% every minute without intervention. However, performing CPR can more than double the chances of survival, hence the importance of bystander intervention and broader training in CPR.

BHF has been actively campaigning for mandatory CPR training in schools, aiming to create a nation of lifesavers. Their efforts have led to successes such as the inclusion of CPR training in the secondary school curriculum in across the UK, ensuring that young people learn this essential skill.

Learn CPR in 15 minutes | RevivR | BHF – BHF

RevivR is a free, interactive, online CPR training course which in just 15 minutes can help you learn how to save a life. Organisations are increasingly training staff on CPR using the RevivR training course, tools and support, to help teams learn lifesaving skills in the workplace.

For students, Classroom RevivR can be used to teach students CPR and defibrillation, and can be accessed straight from their mobile phone, tablet or computer. The tool provides feedback on CPR technique, enabling users to perfect it while they practise.

How to recognise and respond to a cardiac arrest

Recognising the signs of cardiac arrest is critical. Unlike a heart attack, a cardiac arrest is characterised by sudden collapse, unresponsiveness, and absence of normal breathing. When someone collapses and stops breathing normally, immediate action is needed:

  1. Call 999: Contact emergency services immediately.
  2. Start CPR: Push hard and fast in the centre of the chest at a rate of 100-120 compressions per minute. The British Heart Foundation recommends using the rhythm of the song “Stayin’ Alive” by the Bee Gees as a guide.
  3. Use a defibrillator if available: An automated external defibrillator (AED) can restore a normal heart rhythm. These devices are increasingly available in public places and are designed to be easy to use, even for untrained bystanders.

Raising awareness about SADS and the importance of learning CPR is vital in improving survival rates for those who suffer cardiac arrest. By empowering people with the knowledge and skills to act in a crisis, we can save more lives and prevent the sudden loss that comes with conditions like SADS.

For more information on SADS, heart screenings, CPR training, and how you can donate, visit the British Heart Foundation website. Your awareness and action could help save a life.