- Max Lowry, then 33, died of Sudden Adult Death Syndrome on Sept 24 2010
- It was the day before his wedding to Jane Davies, from London
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Jane Davies's marriage to Max Lowry on September 25, 2010, was to begin as a small gathering and grow to include 180 family and friends with a sit-down evening reception at a beautiful venue on the banks of the Thames.
A strikingly good-looking couple, they'd met as teenagers at Marlborough College public school in Wiltshire, then bumped into each other again 16 years later in a bar in London.
Max, then 33, was a young artist whose career was just taking off, while Jane worked for a film company. She remembers Max snaking across the crowded bar towards her.
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Jane Davies (right) and Max Lowry (right) were due to marry on September 25, 2010
'He pursued me!' she says, laughing.
'He seemed playful and mischievous. But I quickly realised that beneath the playfulness, he was sensitive and mature and as ready as I was to go on to the next stage of our lives.'
They became engaged on April 21, 2010, on Max's 34th birthday, and moved into their first flat together in West London at the beginning of September. But in keeping with tradition, a few weeks later they decided to spend the evening before their wedding apart. Jane was at her sister's house ten minutes away when, half-way through a family dinner, she suddenly felt a flutter in her chest.
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Share'I was gripped by this feeling that I had to see Max,' she says. 'I thought it might just be pre-wedding jitters, but I felt unsettled and panicky. I stood up from the table and said: "I need to be with Max." And I'll never forget my sister's reply. She said: "That's lucky, because you've got the rest of your life to be with him."'
What happened next, as Jane says herself, is the stuff of nightmares. Even now, more than three years later, there are days when she still struggles to believe the events of that night actually took place. For a long time she felt she was a horrified bystander, watching a film of someone else's life unfurl in slow motion.
'I ran into the sitting room and called Max's mobile. He answered, sounding fine,' she says. 'There was no indication anything was wrong but I said: "Max, I've changed my mind. I don't want to be apart from you tonight."
Jane was at her sister's house the night before the big day when she felt an urge to be with Max
'And he said: "I love you..."' She repeats the words exactly as Max spoke them. Gently, reassuringly, lovingly. 'Then he made this horrendous noise, like a long moan, followed by spluttering, as if he was having difficulty breathing. I knew instantly something was very wrong.'
Thinking Max might have choked, Jane ran back into the kitchen to find her father, and they jumped in the car. By now Max, still on the other end of the phone, was making a series of noises: moaning, spluttering and gurgling.
'I will never forget that journey,' Jane says. 'It was a Friday night and every car stopped in front of us. Even so, we managed to get there within about 12 minutes.
'My dad was calling an ambulance and I was still on the phone to Max. I was hysterical, screaming at the traffic, at the emergency services operator to please, just get there and at Max, who by now had fallen silent on the other end of the line. I kept telling him: "I love you. Hang in there. An ambulance is coming really, really soon."'
'"I love you", he said on the phone the night before the wedding... Then he made this horrendous noise, like a long moan, followed by spluttering'She thinks it was no more than a couple of minutes after she first called Max before the gurgling noises stopped completely. Jane's father called a neighbour who kicked down the door to their flat and found Max lying on the bed, lifeless, with the phone still pressed to his ear. By the time Jane walked into their bedroom, three paramedics had lifted him onto the floor and were administering electric shocks to his heart with a defibrillator.
Jane could see there was no sign of life whatsoever, but the shock was so great, she was unable to take in what was happening. She looked from her father to her neighbour to the ambulance crew - their faces so grey they looked to her as though they'd caved in.
'I said to one of the paramedics: "This is my fiancé. We're getting married tomorrow." And very gently, she took me outside into the corridor and said: "He's very, very ill."
'After about an hour, they carried him out of the flat, stopping on the stairs every few minutes to give him CPR to keep his oxygen levels up, but I knew he'd already gone. I remember thinking quite clearly: "That's not Max. That's a body they're carrying."'
Every week, 12 young people in the UK aged 35 and under die from Sudden Adult Death Syndrome (SADS). There are thought to be 130,000 people under 35 who may have an undiagnosed heart problem that could trigger sudden cardiac death.
Jane Davies, pictured with her late fiance's artwork entitled Love Floods Every Memory by Max Lowry
Like, Max, around 80 per cent will have had no symptoms. The first manifestation of SADS is often death, unless the heart can be restarted.
When the Bolton Wanderers footballer Fabrice Muamba collapsed during the FA Cup quarter final in March 2012, he was given emergency treatment on the pitch to push blood around his body and keep him alive - his heart was actually re-started in the operating theatre of the London Chest Hospital after 78 minutes.
Max was taken to Hammersmith Hospital where staff continued to work on him for another 30 minutes.
Jane sat in A&E covering her ears, repeating over and over: 'Please don't die, please don't die.'
'I had an image in my head of him waking up in a hospital bed, with me next to him saying: "God, Max, you really had us going there." We were going to talk about it and laugh about it - and he was going to make a full recovery.'
When a grim-faced doctor approached her, she backed away: 'I thought: "I'm getting married to Max tomorrow. You're not going to tell me he's dead, you're not."'
In the months and weeks leading up to Max's death, there had been no indication of anything wrong.
'He had a personal trainer and he took pride in the fact he was so fit,' says Jane. The coroner's report concluded there was absolutely nothing physically wrong with his heart, and this is what makes SADS so traumatic for victims' families.
'You're searching for answers,' says Jane. 'And there are none.'
Since it launched in 1995, the heart charity CRY, (Cardiac Risk in the Young) has received thousands of calls from families wanting to speak to others who have suffered similar tragedies.
'No matter how much professional support is offered, talking to someone else who has been through a similarly harrowing experience often provides the best help.' says founder and chief executive Alison Cox.
This week, on Valentine's Day, the charity is publishing a new book, A Partner's Death, for those who have lost their partners to sudden cardiac death.
SADS is an umbrella term for many different causes of cardiac arrest in young people, sometimes also referred to as arrhythmia syndromes because they affect the electrical functioning and therefore rhythm of the heart. These conditions or syndromes are usually genetic, although they can also occur randomly where there is no family history.
Then, on the phone, Max made a 'horrendous noise, like a long moan, followed by spluttering'
Every year, around 600 otherwise healthy teenagers and young adults between the ages of 14 and 35 die suddenly, although CRY says this may not be the true figure, as sudden unexplained deaths are not automatically referred to specialist pathologists and often may be recorded simply as 'death from natural causes'.
To prevent such tragedies CRY screens 14,000 young people each year in schools and hospitals with an electrocardiogram (ECG) to check the heart's electrical impulses. Around one in 300 is found to have a some kind of heart abnormality, which in most cases won't have caused any symptoms.
As Professor Sanjay Sharma, a cardiologist at St George's Hospital in Tooting, south London, who heads the screening programme, explains: 'Around 20 per cent will have had some warning symptoms. Blackouts - or any transient loss of consciousness - should be investigated, as should palpitations or a sensation that your heart is racing.
'If the ECG is normal, you should be very reassured. But if there is any abnormality, it should always be checked by a cardiologist - as should everyone with a family history of heart problems in the young, because the vast majority, up to 70 per cent of premature sudden deaths, have a genetic cause.' (Max's family was later screened but no heart abnormality was detected.)
If an abnormality is found, procedures such as ablation - where an electric current is used to create scar tissue to block abnormal electrical impulses - or fitting a pacemaker - to regulate the heart's rhythm - mean sufferers can go on to lead healthy lives.
160,000
The number of people in the UK estimated to have an undetected heart condition
CRY believes that screening for heart rhythm abnormalities should be available free to anyone over the age of 14 who wants it. Currently, you are entitled to an ECG on the NHS only if there has been a young or sudden death in your family, otherwise screening at CRY's mobile units across the country costs £35.
A spokesman points out that this is roughly the same price as a pair of trainers, but it has the potential to save a child's life.
In Italy, children who are involved in any kind of sport are routinely screened and the incidence of SADS has been cut by over 90 per cent.
Jane spent the night Max died with his mother, Suzanne; Max had been her only child. The following day, September 25, Jane woke with one thought on her mind. 'This is our wedding day - I have to see Max. I wanted to tell him all about what had happened,' she says. 'And how unbelievable it all was.' And so she walked, flanked by her parents, down a long, cold, silent, sky-lit hospital corridor into an anteroom and then another, to where her bridegroom lay on a mortuary table.
She rushed to him.
'He looked exactly the same, though his skin was cold and hard, like this,' she taps her laptop to demonstrate. 'I leaned over him and stroked his hair which smelled of him and I told him how much I loved him and said that I would never, ever stop loving him and I would never forget him.'
Afterwards, she visited the wedding venue, the Garden Museum in Lambeth, where food was hurriedly being distributed to freezers and the flowers sent back. Someone was cancelling the honeymoon hotel, someone else was calling friends and family to break the awful news.
Later, in the hospital, a paramedic took Jane outside into the corridor and said: 'He's very, very ill'
Jane remembers asking her father if he'd walk her up the aisle so she could imagine what it would have felt like, and seeing the caterer's horrified face as they did so. Max and Jane's friends drifted to Primrose Hill, a place Max had loved and there, the wedding became a wake. One traumatised friend after another asked: 'What can we do to help?' Jane could think of nothing to say, except: 'Just bring Max back.'
When she went back into the flat a few weeks after Max died, her wedding dress was still wrapped in tissue paper and hanging from a doorway and the seating plans were scattered on the sofa.
On the bedroom floor where Max died, she saw a piece of medical tubing which had been used in the attempt to resuscitate him.
At that moment the pain in her heart felt like a physical assault - so intense, so raw, she thought she wouldn't survive it. 'Every part of my body hurt, and everyday sounds - doorbells, mobile phones, the sound of a car horn - were unbearable. I'd think I was coping then the next minute it would hit me again like a freight train.'
Three weeks after Max died, Jane was diagnosed with post-traumatic stress disorder (PTSD) for which she had 'hours and hours' of therapy. The PTSD lessened but for a long time she felt fragile.
Innocent comments by well-meaning friends would 'erupt' like hand grenades inside her. She avoided groups of people and parties. 'At my lowest point, one counsellor told me: "You will get through this. Human beings are designed to withstand the pain of loss." And actually that helped a lot.'
Jane cleaves to memories from the year before Max died. 'We were just so happy to have found each other.' She sifts through treasured pictures: Sightseeing with Max 'like tourists' in London. Cuddled up together in New York, beaming with happiness at their engagement party in France.
Max, his arms wrapped round the woman he loved, radiates good fortune and happiness. 'That's pretty much how he was all the time.'
She looks at her own smiling face. 'So innocent, carefree and in love ... '
Her composure falters for the first time since this interview began, and her tears begin to fall.
Jane suffered for a long time from what she calls recurrent 'reverse nightmares.' Waking up thinking for a moment that everything is OK, then realising the nightmare is real life...' But three-and-a-half years on, living alone in the flat she once shared with Max, she's is able to see a future without him while still treasuring the impact he made.
Max was on the brink of artistic success. His friend, Joe, with whom he designed an extra-ordinary technique for creating 3D street art on painted canvas, has continued the work.
Jane went back to work a couple of months after Max's death. In her spare time, she took night courses in drawing and painting, and in 2012 began renting a small studio where she produces her own abstract work.
She knows that to survive she must focus on the living. 'I appreciate my family so much more now,' she says. 'They cushioned me with support and generosity and love. I force myself forward on a daily basis,' she says.
'Sometimes I can almost feel Max behind me going: "Get on with it!"' She laughs.
'He would have hated me to live in a vortex of grief for the rest of my life - that's not a fitting testament to anyone - and particularly someone as lively and fun-loving as Max.'
c-r-y.org.uk For more information about CRY's Bereavement Support Programme, call 01737 363222 or email: bereavementsupport@c-r-y.org.uk. Max's art can be seen at 3Djoeandmax.com
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