Looking Back at 25: The week that shaped the future of CRY screening for years to come

Over the past 25 years, CRY’s history has been defined by a range of ‘turning points’, underpinned by the actions and interventions of individuals and groups (whether families, MPs, doctors or governing bodies from the world of sport). The support, influence and determination of people committed to our cause is what has taken CRY from a fledgling and ‘niche’ charity back in the mid 1990s to the important and pioneering organisation it is today.

However, as we look back over CRY’s past, present and future through this series of blogs, it’s clear that there was one week in March 2012 that undoubtedly changed the shape of CRY as a screening and awareness-raising organisation, taking our key messages and mission to a new and much wider audience – and making the world sit up and take notice of the importance of testing young hearts.

CRY’s Chief Executive, Dr Steven Cox, explains; “Saturday March 17th 2012 is a day that I’ll never forget. It’s also a day that every player, manager, Club Doctor, teammate and sports fan hopes and prays will never happen – the collapse of one of their team whilst playing the game they love, in front of a huge crowd, and not knowing if that person will survive the effects of a catastrophic cardiac arrest.

“However, that devastating scenario is exactly what happened that evening, during a FA Cup Tie match between Premiereship teams Bolton FC and Totteham Hotspur, playing at White Hart Lane. Around 40 minutes into the game, midfielder Fabrice Muamba fell to the floor, to the shock of the crowds, TV audiences, Club medical experts, and paramedics (as well as healthcare professional amongst the  crowds who left the stands to rush to his aid).

“Respectfully, the cameras stopped rolling and the game was halted as emergency services battled to save the life of Fabrice. There’s little doubt that for everyone involved on the pitch – as well as all those close to the 23-year-old footballer – time stood still. Onlookers were in disbelief that someone at such peak fitness could suffer a cardiac arrest, seemingly without any warning signs or symptoms. Tragically, for all those involved with CRY or affected by the devastating impact of young sudden cardiac death, it was a frightening and all-too-real situation.”

One such individual was a recently bereaved father from Bromley, Kent, Paul Daniels. Paul’s 15-year-old son, Ben, had collapsed whilst playing football at his local club in South East London just 12 months before. Despite the very best attempts of paramedics and the team at St Thomas’s hospital, Ben died three days later, on March 8th 2011. Ben’s death was found to have been caused by a previously undiagnosed heart condition.

On the evening of March 17th 2012, Paul and his family had just come out of the cinema and as such, his phone had been turned off. As he switched it back on, Paul was swamped with messages from friends and family, telling him to check the news as a horrific story, so similar to his own, was unfurling. As they walked past a department store, Paul saw the news reports playing on the large TV screens, about the sudden collapse of footballer Fabrice Muamba, on the field. Without hesitation, Paul called up the famed football show “606” on BBC Radio 5 Live, putting himself forward as someone who could speak from recent, personal experience about the numbing shock of a so-called hidden heart condition in a young, apparently fit and healthy person, literally striking them down without warning. To the disbelief of the presenters, listeners and others calling in to the show, Paul calmly explained that in the UK alone, 12 young people (aged 35 and under) die suddenly from a previously undiagnosed heart condition. And, in 80% of cases, there will have been no symptoms. Having just – the day before – launched a memorial fund in Ben’s name, Paul spoke, movingly, on air for around 15 minutes.

From that moment, the phone to the CRY Press Office started ringing and didn’t stop for at least another fortnight. It seemed that the British (and global) media just couldn’t comprehend that football star Fabrice Muamba had collapsed and was fighting for his life… nor that fact that so many other young people were losing their lives to these hidden cardiac conditions – often whilst playing sport although also when ‘chilling out’ at home or even whilst sleeping.

Dr Cox goes on to explain; “It goes without saying, we were all caught unawares. This is the most terrifying factor of young cardiac death, it comes suddenly, without warning and will always send shock waves throughout a community. In this case – which was unusually high profile and public – it happened at a weekend. As such, some of our key spokespeople were away or unavailable. However, it quickly became apparent that we needed to mobilise and respond to this unfolding situation swiftly and sensitively. We were acutely aware that Fabrice Muamba – whilst reportedly ‘saved’ at the scene – was still likely to be extremely unwell and we had no idea of his condition or the cause of his collapse.

“However, as a charity and the ‘voice’ of 100s of families across the UK who’d been similarly affected, we also knew we had a responsibility to provide accurate and measured information and comment to the world’s media.

“Our Press Office has always been incredibly quick to respond to journalists’ requests and Professor Sanjay Sharma and his team have always been willing and extremely adept at providing expert explanation, comment and soundbites. However, the fortnight that followed was utterly unprecedented (leading Sanjay to remark in later years, that he simply didn’t sleep for a week!).”

Looking back over the media logs that were recorded during that time, it comes as no surprise to us that almost 100 media interviews were carried out, following the sudden collapse of Fabrice Muamba. Every national newspaper in the UK, all major broadcast networks from BBC and Sky to Channel 4 and CNN wanted a comment and expert insight to help understand the causes, incidence and impact of cardiac arrest and sudden death in young people. CRY supporters and families (including Paul Daniels again, taking on a number of national news opportunities) stepped in to share the load with Professor Sharma and both Steve and Alison Cox.

Everyone involved was driven by the same motivation of using this platform and international audience to raise awareness of young sudden cardiac death and CRY. Questions included the scale of young sudden cardiac death; the statistics and data; the research being carried out into the conditions that can cause cardiac arrest in young people; and, not least, the importance of proactive cardiac screening, overseen and assessed by specially trained cardiologists (for elite athletes, grassroots sportspeople and the general public, aged 14 to 35).

The awareness, chat shows, news reports, interviews and ‘column inches’ worked. The ‘word’ about cardiac screening was officially out there – suddenly everyone (sports clubs, schools, parents, teenagers) knew about it and everyone wanted to find out more and to book in for screening. In fact, in the days that followed, the website crashed, initially unable to cope with demand. Interest in cardiac screenings rose exponentially and within weeks, CRY screening sessions across the UK were fully booked, with waiting lists of 18 months – a rate that has never really fallen since.

The CRY screening programme adapted accordingly over the past 8 years, developing and growing to ensure as many young people who want it can access a free cardiac screening close to their home. CRY families have also risen to the challenge, raising funds and awareness to make sure we’re doing all we can to meet this need. And, before the hiatus caused by COVID-19 and ‘lockdown’ the CRY screening team was testing 32,000 young people a year. Hopefully, it won’t be too long before CRY’s screening programme is back up and running and delivering expert screening to young people in the community as well as sporting settings.

Dr Cox concludes; “The evening of March 17th 2012 saw a hugely shocking incident, which rocked the world of football, as well as making the world at large aware of young sudden cardiac death and the preventative role of specialist cardiac screening. Fabrice’s collapse had come almost 10 years after the tragic death of Marc Vivien Foe – again during a live televised match. There is little doubt that these two similar and devastating events – but with very different outcomes – created platforms to discuss progress in screening, research as well as heightening overall awareness. It goes without saying, we were all so relived that Fabrice recovered from this terrifying cardiac arrest and it is wonderful that he has gone on to be a true advocate for heart health awareness in young people.

“The media attention that followed created a new level of interest and understanding in young sudden cardiac death and everything CRY does to prevent these tragedies. The press office quickly became the first port of call for journalists researching and reporting on the issue of young sudden cardiac death.

“This relationship with the media has continued to grow and grow – and a conscious decision was taken to work ever more closely with ‘CRY families’ as spokespeople, representing the true impact of young sudden cardiac death, in their own, powerful words.

“It’s true to say the sudden events of March 2012 – just months away from the London Olympics, which we’d been building up to for years – created a huge turning point in CRY’s history.”