'My healthy sister just never woke up'. The reality of Sudden Adult Death – and how to protect yourself

Patrick Mead had just finished his breakfast one Sunday morning in October 2019 when he noticed his sister, Lauren, hadn’t yet left her bedroom. The siblings worked together at a restaurant near their family home in Frome, Somerset; they had a shift that morning and Lauren was going to be late. Their mother walked upstairs to check on Lauren – and that was the point at which their “world just stopped”, Patrick remembers. Lauren, the seemingly healthy 19-year-old with whom Patrick used to gossip every afternoon after school, had died in her sleep. Her parents laid her on her bedroom floor and gave her CPR. In a recording of a 999 call made that morning, Patrick’s mother can be heard sobbing down the phone, telling the operator: “She’s blue … she’s gone.” The family did not yet not know it, but Lauren had fallen victim to Sudden Arrhythmic Death Syndrome, sometimes known as Sudden Adult Death Syndrome, or SADS. It is a poorly-understood condition in which a person dies from unexplained cardiac arrest where no cause can be found at post-mortem. It kills upwards of 500 people in the UK each year, most of whom appear outwardly healthy. It is far more likely to affect those aged below 35, for whom it is the third highest cause of death behind suicide and road accidents. Athletes are at particular risk. It is different to a heart attack, which occurs when an artery is blocked and usually affects middle-aged or elderly people. Until recent decades, scientists knew very little about SADS. Deaths were described simply as “unexplained”; families were left without answers. But innovations in heart-screening technology have provided clues. Although it is not always clear in individual cases, experts now think SADS is usually caused by an inherited heart condition like Long QT syndrome or Brugada syndrome. If you have one of these conditions, your heart will probably beat normally for most of your life. But there’s a small chance that at some point, without warning, the electrical signals that move around your heart will falter, causing the bottom of your heart to start beating very fast. Soon, the heart starts to quiver and becomes unable to pump blood. If you have one of these conditions and it goes untreated, your likelihood of having a cardiac arrest in any given year could be as high as 10 percent, according to Katie Frampton, a specialist cardiac conditions nurse at London’s St George’s Hospital, one of the UK’s leading centres for identifying and preventing SADS. “It can be [triggered] by certain medications or certain circumstances. Often it happens just randomly, with no prior warning,” she says. For the families left behind, the lack of answers can prove maddening. Patrick remembers the hours after Lauren’s death as a whirlwind of confusion. “Everybody was panicking. I didn’t really know what was going on.” His parents rang his school where he and Lauren had both been in Year 12. Soon, he had a string of shocked messages from friends. “I didn’t want to have to open them, because that’s when you acknowledge that something’s happened.”

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