Cameron: 'If we can't look after him, we have failed'

The Times
February 26, 2009

In an extract from their book, David Cameron's biographers explain the impact of Ivan
Francis Elliott and James Hanning

Ivan Cameron was born in Queen Charlotte's Hospital in London on Monday, April 8, 2002. The birth was by a Caesarean section, made necessary at the last minute because Ivan was the wrong way round in the womb. Otherwise it was a normal delivery of an apparently healthy baby boy. It was a joyful event but even then a period of mixed emotions: in nearby Hammersmith Hospital at the same time, David Cameron's godfather Tim Rathbone, Ian Cameron's schoolfriend and a significant personal and political inspiration, was having tests for cancer. He visited Samantha in hospital but was to die some weeks later. “The fact that he was dying while my son was being born seemed to have some kind of symbolism. It made his birth all the more poignant and moving,” Cameron later told a friend.

Although Ivan was their first child, they quickly sensed that something was wrong. At Queen Charlotte's he seemed to have occasional spasms. Otherwise he seemed a very sleepy child and Samantha struggled with breast-feeding. But the health visitor paying the routine postnatal call to Ginge Manor, where mother and baby had gone after leaving Queen Charlotte's, saw no reason to be alarmed.

Within a week of his birth it was clear that Ivan, still very sleepy, was losing weight. Sometimes his hand would spring open in a series of small but repetitive impulses. As first-time parents, David and Samantha Cameron had nothing to compare their son's behaviour to and, reassured by the advice of the health visitor, showed off their son to Dominic and Tif Loehnis that weekend.

But, as Ivan entered his second week, the jerks were becoming more pronounced. Annabel Astor had become sufficiently concerned to drive her daughter - on her birthday - and grandson to the local GP.

The doctor's initial diagnosis was that the newborn was suffering from a kidney malfunction. He directed them to the accident and emergency department of the John Radcliffe Hospital in Oxford. It was here that the baby had his first major seizure in front of a doctor.
The nature of Ivan's condition was beginning to be shockingly apparent.

David Cameron, joining his wife at the hospital, shared her distress as their tiny child was subjected to 48 hours of blood tests, brain scans and lumbar punctures. Of all the tests, the one that was picking up the most identifiable evidence of Ivan's problem was the electroencephalogram (EEG). The EEG records brainwave patterns from electrical signals emitted by the brain. This showed the high-voltage “spikes” that occur in epilepsy, but they were followed by very little activity.

After one last confirming EEG, Mike Pike, a paediatrician, took the couple into a side room to talk. With ominous purposefulness, he placed a box of Kleenex beside them. He told them that this was very serious, that the pattern he had seen was consistent with “a very poor outcome and severe disability”. Ivan, he said, would have “very serious difficulties”. Cameron, struggling to take the gravity of the diagnosis on board, said: “When you say he's got serious difficulties, does that mean he's going to have trouble doing his maths, or does that mean he's never going to be able to walk and talk?” Pike said simply: “I'm afraid it means he probably won't walk or talk.” Within a few days they had a name for Ivan's condition: Ohtahara syndrome.

The National Institute of Neurological Disorders and Stroke (NINDS) provides the following definition: “a neurological disorder characterised by seizures ... most commonly caused by metabolic disorders or structural damage in the brain, although the cause or causes in many cases can't be determined”. Most infants “show significant underdevelopment of part or all of the cerebral hemispheres. The course of Ohtahara syndrome is severely progressive. Seizures become more frequent, accompanied by physical and mental retardation. Some children will die in infancy; others will survive but be profoundly handicapped.” Unsure whether Ivan would live for weeks or years, Cameron ensured that his son was christened at the earliest opportunity.
Cameron has said that the news hit him “like a freight train”. A friend observes that the couple entered “a very, very grim and difficult period” Emotionally, they had to overcome the discrepancy between the elation they had felt at the birth of their first child and the reality of what lay ahead. “You are depressed for a while because you are grieving for the difference between your hopes and the reality,” he has said.

There were immediate practical issues to address, the most pressing of which was how best to manage his condition. Ivan went through further tests at Great Ormond Street and Queen Mary's hospitals in London as doctors experimented with cocktails of drugs. David and Samantha Cameron, taking it in turns to sleep beside their son on hospital floors, were given a brutal lesson in the reality of life as the parent of a disabled child. After his initial shock Cameron has described how he began to surface. “There was a moment driving home from hospital and just thinking ‘We are going to get through this. If we can't do a good job and look after him, then we have failed'.” Initially the Camerons tried to look after Ivan themselves, without the support of their local authority's social services department. For a year the couple struggled with the situation largely on their own, although they had help from a special-needs-trained nurse during the day. Three and a half months after Ivan was born, Samantha had returned to work - as planned - for two days a week, and after five months she was back doing nine-day fortnights. It was a difficult decision.

On the one hand she worried inconsolably about Ivan's minute-to-minute care, but, on the other, her career was important to her and she had always intended to carry on working.
Childcare was shared between them. Journalists spotted Cameron bottle-feeding his son in Westminster that summer and cited it as evidence of the changing nature of the Tory party, not knowing the fullness of that truth. The young Tory MP also took Ivan to meetings at Carlton, where he remained a consultant. Former colleagues could hardly fail to notice the difference in him. At Edwina Paine's engagement party, one said he seemed a “different man ... he seemed much less frivolous”. Another senior colleague said: “He'd walk around with that baby in a basket, he'd come to every meeting.” Where previously Cameron had appeared “arrogant”, “this was a real leveller”.

Giles Andreae has said that Ivan's handicap had given Cameron “more humility”. Cameron has admitted as much himself. “Having a severely disabled son does bring you into contact with a lot of other elements of life. You do spend a lot of time in hospitals, you meet a lot of other parents and families in the same situation. It's an eye-opener.” At one point, Ivan's blood pressure shot up and he had to be rushed to the renal unit at Great Ormond Street. Cameron found that hospital visit in particular a strange experience. “He was struck by the fact that there were all these kids there who had been on dialysis for months, being incredibly courageous with these awful, awful problems,” says a friend. “I think it made him realise that there are other people in similar situations. On one occasion he was there all night, and at about 4am he was reading Jack and Jill to someone else's kids, and then had to go to Parliament early the next day to carry on with life as normal.”

© Francis Elliott and James Hanning 2007. Extracted from Cameron: The Rise of the New Conservative (Fourth Estate, £18.99) Available from Times BooksFirst for £17.09, free p&p. 0870 1608080, timesonline.co.uk/booksfirst. The Times, on behalf of the authors and the publisher, has made a donation to Mencap and St Mary's Hospital