'It was as if the world stopped turning': David Cameron says 'nothing could prepare him' for his 'darling' son Ivan dying aged six as he reveals the emotional 'torture' he can hardly bear to remember

  • New memoirs by former PM David Cameron recounts the harrowing final hours of his son Ivan's life, who died aged six in 2009 from rare neurological disorder 
  • He describes how he anticipated 'idyllic' first weeks of being a new parent after Ivan's birth in 2002 but then came devastating Ohtahara syndrome diagnosis
  • Describes the helplessness of watching his son have 20 to 30 seizures a day and says he lacked the patience and selflessness that being a great carer requires
  • Describes grief following his death, as 'torture' and says Samantha was 'torn apart' at losing the couple's first-born child 

Former Prime Minister David Cameron has spoken candidly about the heartbreak he and wife Samantha suffered after the death of losing their son Ivan, six, in 2009, describing the ensuing grief as 'torture'.

Mr Cameron, who has three other children, Nancy, 15, Arthur, 13 and Florence, nine, reveals in his new memoirs the devastation the family endured during the final moments of Ivan's life, saying it's 'almost too painful to relate' - and shares his own frustrations at not having the 'patience and selflessness' that's required to be a 'great carer'.  

The couple's first-born child, Ivan was born with Ohtahara syndrome, a rare neurological disorder that would see him suffer 20 to 30 seizures a day.  

In the deeply emotional recollection, published in the Sunday Times, the ex PM recounts how he was plunged from the elation of having a newborn in 2002 before being thrust into devastation when Ivan was diagnosed with the severely life-limiting condition just weeks later. 

Cameron also shares in detail the harrowing night Samantha drove their son to hospital, on February 24th, 2009, and how he joined her later only to find a resuscitation team losing the battle to save Ivan's life.

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Heartbreak: The former Prime Minister pictured with his late son Ivan, who died in February 2009 after complications caused by Ohtahara syndrome, the neurological disorder he'd had since birth. Mr Cameron, 52, reveals in his new memoirs the physical pain he felt at losing his first-born child, saying 'it was as if the world had stopped turning'

Heartbreak: The former Prime Minister pictured with his late son Ivan, who died in February 2009 after complications caused by Ohtahara syndrome, the neurological disorder he'd had since birth. Mr Cameron, 52, reveals in his new memoirs the physical pain he felt at losing his first-born child, saying 'it was as if the world had stopped turning'

David Cameron, who was leader of the opposition at the time of Ivan's death in February 2009, speaks candidly about his son's short life in his new memoir, saying Ivan would suffer sometimes up to 20 to 30 seizures a day (The Camerons pictured in 2007, with children, from left: Arthur, Nancy and Ivan)

David Cameron, who was leader of the opposition at the time of Ivan's death in February 2009, speaks candidly about his son's short life in his new memoir, saying Ivan would suffer sometimes up to 20 to 30 seizures a day (The Camerons pictured in 2007, with children, from left: Arthur, Nancy and Ivan)

Writing with searing honesty about the tragedy, the former Conservative leader said he can 'hardly bear to remember' those dark times.

He writes: 'Nothing, absolutely nothing, can prepare you for the reality of losing your darling boy this way.'

Cameron also divulges how Ivan's short life affected wife Samantha, saying the fashion designer was 'torn apart' by his tragic death and struggled to watch her son in pain. 

The no-holds-barred memoirs shares the first moment the couple began to notice that their son wasn't developing as a newborn should. 

Just a week after his birth, when the couple were expecting to enjoy 'idyllic' moments as new parents, Ivan began rapidly losing weight and making jerky movements.

He was eventually diagnosed with Ohtahara syndrome - a rare neurological disorder characterised by seizures.

Cameron said being told the news of his son's condition had brought him and his wife Samantha 'close to collapse' and described the immense shock of going from 'a  world in which things had always gone right for me' to the reality of Ivan's condition.

Cameron says his friends have told him that he's changed for the experience of being dad to Ivan but he admits he felt that while he was always there in emergency situations, he struggled to have the patience that a truly great carer has

Cameron says his friends have told him that he's changed for the experience of being dad to Ivan but he admits he felt that while he was always there in emergency situations, he struggled to have the patience that a truly great carer has 

The memoirs, For the Record, see the ex PM discussing his personal and political life with searing honesty. 

Despite starting the Brexit process by calling for the 2016 EU referendum, he has slammed former colleagues Boris Johnson and Michael Gove in his new book for the way Britain's exit has stalled, saying: 

  • Cameron said current PM Boris Johnson was dominated by his own political ambitions, saying he wanted become the 'darling of the party'
  • Lashed out at former friend Michael Gove, who co-led Vote Leave, calling him a 'foam-flecked Faragist'
  • Mr Cameron has accused Leave campaign of declaring 'open warfare' on him
  • Said he felt personal failings for the result after failing to publicly promise to block Turkey from joining the EU - a high-profile campaign issue in 2016;  

WHAT IS OHTAHARA SYNDROME?

Ohtahara syndrome is a rare complication of epilepsy, affecting just one in 500 sufferers, and boys more than girls.

It is caused by an underlying structural brain abnormality which may have a genetic origin or is the result of brain damage.

It is rarely an inherited disorder and it is thought only four families in the world have two affected children.

Seizures start before the baby is three months old. Most die before the age of three, often due to chest infections or pneumonia.

A phenomenon known as sudden unexplained death in epilepsy is also a constant fear.

Babies with Ohtahara syndrome - first described 30 years ago - are often very floppy, excessively sleepy and over time develop stiffness in their limbs.

Medication has limited effect and the children make little developmental progress, being totally dependent on others.

They often feed poorly and their sleep is punctuated by seizures and muscle spasms - between ten and 300 every 24 hours, which make round-the-clock care a necessity.

The one-time MP for Witney previously also revealed how Ivan was forced to undergo dozens of often painful and invasive tests before doctors knew he had Ohtahara syndrome, something that he hopes will be reduced to just a simple blood test for future parents. 

Cameron said new and advanced genomic testing could end the anguish of uncertainty for parents of children with such rare neurological disorders. 

The youngster was given a cocktail of drugs to manage his condition, his father revealed, as many as 20 different drugs a day. 

And Cameron shared that he was 'always there' for the emergency admissions Ivan had to endure, caused by seizures, infections and changes in his blood pressure. 

He says his friends have commented how being dad to Ivan changed him and that, while he was good at managing the 'technical' side of his son's condition, he knows that he lacked the 'patience' and 'selflessness' that those who care full-time for people with conditions like Ivan's require. 

In both 2002 and 2003, Mr Cameron had to abandon the Tory party conference because Ivan was in hospital.  

In an interview with the Times in 2018, he said : 'Different treatments are tried, some with excruciating and potentially damaging side-effects. Huge efforts are being made on your child's behalf, but no one knows exactly what is wrong or how to make it right.

'In many cases the doctor is unlikely to have seen a patient with the same condition before. They are left to rely on intuition and antiquated tests to determine which of the 7,000 rare diseases may be affecting the child.

'This gruelling process can go on for months, even years. If a correct diagnosis is eventually made it is often too late to undo critical damage that has already been done to the child's development.

'Yet we are on the brink of a huge breakthrough. Instead of looking at individual chromosomes [through genome sequencing]  we can sequence the whole genome, determining the unique ordering of three billion letters found in almost every cell in a person's body. Rather than testing one disease at a time, this process simultaneously can test for all rare diseases, 80 per cent of which are genetically based. All it takes is a blood test. It is that simple.'       

Though Ivan's condition meant he could not move his limbs or speak, the Camerons drew strength from the fact that he appeared to respond to their love and care.

'Ivan's only self-conscious movements are to raise his eyebrows and to smile,' Mr Cameron said in 2004. 

'And his smile - slightly crooked, sometimes accompanied by a little moan - can light up a room. It never fails to make me both happy and immensely proud of him.'

But asked once if he thought Ivan enjoyed his life, he replied: 'Oh, not really, I think his life's very tough.' 

Mr Cameron added: 'We were all devoted to Ivan and as a family we still talk about him all the time today.'

David Cameron admits 'nothing could prepare him' for his son Ivan dying aged six

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