Late one morning, heart surgeon Professor Martin Elliott was scrubbing up in preparation for a major operation when a colleague popped his head round the door and said: ‘You need to go home urgently.’

The colleague had no idea what the emergency was, nor did Professor Elliott’s secretary — all she could tell him was that his son, Becan, had called, saying that his father had to get home ‘straight away’.

Unable to get through to anyone on the phone at home, he grabbed his coat, ran out into the rain and hailed a cab to take him on the half-hour journey from Great Ormond Street Hospital to the family home in West Dulwich, South London.

As the taxi turned the final corner, Professor Elliott felt a rising sense of panic: his house was surrounded by paramedics and ambulances.

He was met at the door by a strained-looking Becan, who broke the news that his older brother, Toby, had died in his sleep. He was 26.

Warning sign: Toby Elliott (pictured) had bitten his tongue during his sleep

‘As Becan told me what had happened, I felt as if the wind had been knocked out of me,’ recalls Professor Elliott.

‘As part of my job, I am trained to deal with trauma, but at that point, it meant nothing — my professionalism left me. I was struggling to take everything in.

‘Becan was like a rock and put his arm around me and guided me upstairs to Toby’s room where my wife Lesley was. She was in tears.’

It was Lesley who had found Toby, after going up to see why he had not come down for breakfast.

‘She was in the most awful state,’ says Professor Elliott. ‘I just sat beside Toby for ages.

‘The worst thing was not being able to say goodbye — he was suddenly gone. You think of all those things you didn’t get round to saying — the stories you wanted to share.’

The grief hit the family hard. ‘The way the books describe it is that you go through things in order — shock, denial, guilt, anger, despair — but what they don’t tell you is that, sometimes, you will feel these things all at once, and sometimes, you will feel nothing at all — just a hollow numbness,’ says Professor Elliott.

In the immediate aftermath, as well as the grief, the family were left with the question: ‘Why?’

There was only one clue. A year before he died, Toby had bitten his tongue in his sleep.

‘Toby thought it had occurred during a nightmare — I had a vague thought that he might have had a fit,’ says Professor Elliott.

‘We took him to our GP to see what he thought and he said if it happened again to let him know.

‘We felt reassured, especially as it did not happen again.

‘But then, the night before Toby died, he bit it again, not too badly. Toby thought that it was just a bad dream, but my wife and I were worried that it might be a sign that he was having fits.

‘Unfortunately, we didn’t get a chance to do anything about it as, at some point during the next night, he died.’

A bitten tongue can occur during an epileptic seizure and the two incidents helped determine that Toby had epilepsy.

In fact, he had suffered SUDEP, sudden unexplained death in epilepsy, thought to be caused by an interruption with the autonomic nervous system, which controls our breathing and heartbeat, possibly triggered by anything from lack of sleep to a bright flash of light.

Typically, no physical problem is found by the post-mortem and while most of those who die will have had a history of major seizures, some may not have had a seizure before.

Seizures are the most common cause of death among those with epilepsy

It is the most common cause of death among those with epilepsy.

Professor Elliott knew nothing about SUDEP until a neurologist who attended Toby’s funeral said to him: ‘It must have been SUDEP.’ It is a significant risk to those with epilepsy — but awareness of it remains low, even among medics.

‘Neither I nor five professors of medicine who came to Toby’s funeral had heard of it before,’ concedes Professor Elliott, who is also a professor of physic at Gresham College.

‘Sometimes when it happens, as there is no obvious cause, it is treated as a suspected murder,’ he says. ‘I have heard from those whose homes have been turned into a crime scene in the aftermath of what is a SUDEP death.’

It was weeks after Toby’s death that Professor Elliott received the post-mortem results: having found nothing untoward, and given the tongue biting, the pathologist said SUDEP must have been the cause.

Around half-a-million people in the UK have epilepsy, caused by overexcitable brain cells that suddenly discharge electrical energy, resulting in a seizure. The type and scale depends on the area of the brain affected.

‘For example, if it’s in the temporal lobe (the area behind the ears, involved in hearing and perception), it might just cause an unusual memory, which people experience as a strong sense of deja vu, or cause them to have an unusual taste,’ says Professor Philip Smith, a consultant neurologist at the University Hospital of Wales, Cardiff.

‘If it’s in the occipital area (at the back) of the brain, it may cause visual disturbances, and if the whole brain is affected, it can mean that someone becomes unconscious during a seizure.’

The causes of epilepsy vary. ‘Epilepsy is really a symptom of many different conditions,’ explains Professor Smith. ‘It’s best thought of as similar to pain, in that you get it through many different causes.’

These include brain injury, a genetic susceptibility, a tumour or other brain diseases, including dementia. ‘It can also be caused by a scar on the brain acquired typically before birth or in the first two years of life when the brain is at its most vulnerable — either by injury or an infection,’ says Professor Smith.

Sometimes, as in Toby’s case, there is no obvious cause.

Treatment includes surgery to remove physical causes, or medication to reduce the excitability of the brain cells, says Professor Smith. ‘It’s a bit like treating high blood pressure — you might use three different tablets that work in different ways in order to get the desired outcome.’

He adds: ‘Trying to prevent major seizure is really important.’ That’s because they can prove fatal — they can lead to accidents, for example, but major seizures are also linked to an increased risk of SUDEP.

Professor Elliott says: ‘Around 30 per cent of those who die of SUDEP haven’t been seen by a health professional for more than 12 months — even though they have had seizures.’ Both he and the charity SUDEP Action would like this to change.

Regular checks help detect any increase in seizures, then changes to medication or lifestyle can be suggested to better control them.

Yet 10 per cent of the 500 SUDEP cases a year occur in people who have not had a seizure before.

Toby, a budding film editor, died seven years ago, but Professor Elliott has only recently researched SUDEP and become involved with relevant charities. ‘Before, it was all too painful for me,’ he says.

He would like a tissue and blood bank established for those who have died from SUDEP or cardiac sudden death to help determine why these deaths happen and to save others from the pain they went through.

‘The yearning to see Toby just once more never goes away, and not a day goes by without us thinking about him,’ says Professor Elliott. ‘We all continue to struggle in various ways — we cope rather than win.’

sudep.org