for the EU, as it was currently constituted, as in any way ‘modern’. But we did believe that ‘banging on about Europe’ (a phrase I was famously to use a year later) was damaging, because while it was just about in the top ten issues for the British public, it seemed to be the only thing that the Conservative Party really cared about.
The biggest influence on me in all these discussions was George Osborne. He was the most convinced, and the most convincing, moderniser. From the very start we built a genuine partnership of a kind that I believe is very rare in modern politics. We each wanted the other to succeed. There was no senior partner and no junior partner. Above all, what mattered most was trust: we came to know that we could tell each other anything, and it would not be passed on to others, and certainly not to the press.
This relationship, and our shared view of what needed to happen, would become stronger during the general election of 2005. Michael Howard gave us both key roles and ringside seats in the last of the contests that we would fight and lose together.
7
‘You’re the first, the last, my everything …’ The lyrics of the Barry White song boomed across the operating theatre from a radio. I’d always been a fan of his music, but I was concerned that it was too loud, and the team of doctors and nurses hovering over Samantha wouldn’t be able to concentrate.
I needn’t have worried. Everything went smoothly. And within minutes I was holding our first-born son, Ivan.
It was 8 April 2002, and we were in Queen Charlotte’s Hospital in Hammersmith. Samantha was having an emergency caesarean, because when her contractions started it turned out that Ivan was ‘feet first’. In other words he was the wrong way round in the womb, or what they call an ‘undiagnosed breech’.
Sam and I had been married for five years, and had built our life together in our house in North Kensington. Neither of us had any regrets about waiting before having children. Sam had the job she had worked so hard for, as creative director at the Bond Street store Smythson. I had been elected to Parliament, representing a seat that suited me down to the ground. We had taken the risk of borrowing a lot of money to buy a small house in the constituency, in the hamlet of Dean, near Chipping Norton. There didn’t seem to be a cloud on the horizon. But our life was about to change in a way we never expected.
When Ivan first arrived, there didn’t seem to be anything wrong. With caesarean births, the dad is the first person to hold the baby. Bursting with pride, I squeezed him tight as we crossed the room to check his weight and carry out the initial tests. Ivan was a small baby, just over six pounds, but he passed all of them with high scores.
We were the typical proud parents. Grandmothers and grandfathers, sisters and brothers all came to visit the new arrival in a room that rather eerily overlooked the exercise yard of next-door Wormwood Scrubs prison. One of the first to come was my godfather Tim Rathbone, who was suffering from terminal cancer and was being treated at the next-door Hammersmith Hospital. I could see that he was dying, and it felt so poignant that he was there.
Once Samantha was well enough, we headed off to her mother and stepfather’s house in Oxfordshire, where we were going to spend those supposedly idyllic first few days together. But then we noticed that something was wrong. Ivan was sleepy, like many premature babies. And, again like many others, he would sometimes wake with a start, hands outstretched. But we noticed that these sudden and jerky movements were happening more and more.
The worries mounted. He wasn’t feeding properly. He was losing weight. And the movements got worse. He was tiny, but these looked like full-grown seizures. So, after a friendly but inconclusive visit from the local GP, we jumped in the car and headed for the John Radcliffe Hospital in Oxford.
And so the litany of specialists, children’s wards, tests and treatments began. The staff at the hospital did all they could to reassure us. But when you watch your tiny baby undergoing multiple blood tests, your heart aches. When they bend him back into the foetal position to remove fluid from the base of his spine with a long, threatening-looking needle, it almost breaks.
The meeting with the consultant, Dr Mike Pike, for the initial verdict on all these tests is etched forever in my mind. As we sat down, a box of tissues was placed on the table by our side. ‘Severely delayed development,’ he said. These words were carefully chosen, and there is a whole industry of literature and thought behind them. But they don’t mean much to the uninitiated new parent. I asked whether this meant he would struggle at sport, or spend his life in a wheelchair. ‘I’m afraid it’s more likely to be the latter,’ was the reply.
It turned out that Ivan had ‘Ohtahara Syndrome’, named after the Japanese physician who first observed it. Like many of these diagnoses, it is more a description of a set of symptoms than an explanation of how it happened or what can be done about it. Put bluntly, the cause was unknown. The treatment options were uncertain. And there was no cure.
Ohtahara Syndrome is incredibly rare, but our Ivan was a typical case. What its sufferers tend to have in common is severe and often uncontrollable epilepsy, and very poor outcomes in terms of development. Most are quadriplegic (unable to use their limbs) and suffer severe developmental delay (unable to speak, or communicate properly).
The news hit us both very hard. Like all parents, we had worried about having a healthy baby. But, also like many others, it is something you don’t think will actually happen to you. We were almost completely unprepared.
And when it does happen, the effect is sudden, deep and lasting. It takes a long time to understand what has taken place. You enter a period of mourning, trying to come to terms with the difference between the child you expected and longed for, and the reality that you now face.
But like so many things to do with the human spirit, there is a resilience that you didn’t know you had. You feel such strong bonds of love, and such desire to protect this beautiful little creature, that something inside you helps you through.
We went home to Dean, and the tears flowed. How would we manage? What would it be like? Most of all, how could we cope with seeing our precious child suffer so much?
Today, when I think of Ivan, I think of how we did cope. I think of the smiles and the holidays. Covering his legs with warm sand on the beach in Devon. Or trying to get him to sit on a pony. Or lying with him for hours on my lap or on my tummy. Having a bath with him and the other children, with Nancy and Elwen gently washing his hair. Swinging in a hammock and listening to him gurgle with pleasure. The happy memories are now at the front of my mind.
But if I think for too long, I also remember the seizures. He could have twenty or thirty in a day, lasting for minutes, or sometimes hours, his small frame racked with spasms and what looked like searing pain. By the end his clothes would be drenched in sweat and his poor little body exhausted. And so often, there was nothing we could do. It was a torture that I can hardly bear to remember. For Samantha, the mother who bore him and who loved him so deeply, it was a torture that was tearing her apart.
In those early days after Ivan’s birth we talked and talked together. On one car journey back from the John Radcliffe to Dean I remember saying, ‘We are going to make it.’ We had to. We hadn’t wanted this. We weren’t prepared for it. But we loved him, and we would find a way through. If we, with all our advantages, our security, our love for each other, couldn’t manage, then who could? There would be many times in the subsequent months and years when we felt close to collapse, and would remind each other of this conversation.
Something had happened before Ivan’s birth that did give me pause for thought – and at least some mental preparation. A constituent called Tussie Myerson who lived in a neighbouring village had asked me, as the new MP, to come and see her to talk about the care, or rather the lack of it, that her severely disabled daughter Emmy was receiving. When I arrived she sat me down at her kitchen table, wedged in with her nine-year-old daughter in a wheelchair next to me, so I couldn’t