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‘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 move. She told me years later that she had done this on purpose: she wanted me to see just how difficult it was to cope with someone who couldn’t feed themselves. Who couldn’t communicate. Who was in permanent danger of choking. Who was frequently ill and prone to powerful seizures. Tussie never told me whether or not I passed the test. But as I look back and remember our discussion of care packages, respite breaks and special schools, and how little I knew then, my sense is that I only narrowly avoided outright failure.

After Ivan was born, Tussie got in touch and offered much sound advice, along with huge amounts of sympathy. She said, ‘Always remember, you didn’t volunteer for this. You’re not angels, and you shouldn’t pretend that you are. Do everything you can to keep your love for each other, and your marriage and family together.’ I always remembered this, and have passed on similar advice to dozens of other parents with disabled children.

That said, we had no idea how difficult it was going to be. We soon moved from the John Radcliffe back to our home in London – and frequent visits to St Mary’s Hospital, Paddington. More tests. More drugs. More attempts to stabilise Ivan’s condition, with the aim of providing at least some limited quality of life.

From there he moved on to Great Ormond Street, which richly deserves its reputation as one of the best children’s hospitals in the world. We tried different medications. Cocktails of anti-epileptic drugs, one added to another, with dosage levels changed to try to get control of the seizures. Too strong and he was crashed out, asleep for most of the day, with his chances of developing like other children set back even further. Too weak and the seizures would return, his little body convulsing and our hearts breaking all over again.

Most of the medicines tasted disgusting, and it was often impossible to get him to keep them down. He developed ‘reflux’, where everything – milk and medicines – would come shooting back up again, sometimes accompanied by a burp and a winning smile. It was almost as if he was telling us that nothing was going to work. Even when we could get the medicines down, the epilepsy always seemed smarter than the doctors. No matter what combinations of drugs and treatments we tried, it would emerge again, the seizures often stronger than before.

We tried steroid injections, which have helped other children. They made his weight balloon and his blood pressure rise, and his kidneys came close to failing. We ended up in the renal ward of Great Ormond Street, where Sam and I took turns to sleep on the floor by his bed. Most of the other children on the ward had kidney problems, and when Ivan was asleep I would read them stories to pass the long hours they were stuck in bed waiting for the next operation or dialysis session.

We certainly saw the best of the NHS, with consultants like Mike Pike at the John Radcliffe, Diane Smythe and Mando Watson at St Mary’s and Helen Cross at Great Ormond Street. They have changed and improved the lives of so many children, and they did a lot to help Ivan. But I think they would all agree that he was one of the toughest cases they’d ever had to deal with.

We also saw at first hand how little is really known about some of these complex medical conditions. Before Ivan, I had always assumed that even if they were incurable, most diseases were correctly diagnosed, their causes were understood, and medicines could always be prescribed to ease at least some of their symptoms. But in this case of severe epilepsy, the doctors didn’t know the cause, and even if the medicines did (briefly) work, they didn’t really know why. They were basically changing dosages, hoping to make progress but with little understanding of what might work and what might not.

Wanting to know whether we could have other children, we signed up for ‘genetic counselling’, which in 2003 was very much in its infancy. This was another field in which we discovered how little is actually known. To start with, no one had any idea whether Ivan’s condition was inherited or not. If it was, there might be a one in four chance of it happening again. If it wasn’t, it was one in many thousands. So we were offered a sort of ‘blended probability’ of one in twenty. Remembering how few of my father’s 20–1 shots ever came in at the races, we decided to risk it.

It was one of the best decisions we’ve ever taken.

Nancy arrived in 2004. We were so worried something might be wrong that every movement she made was carefully watched and analysed. We needn’t have worried: she was the easiest of babies, and hit every milestone on time.

Above all, we saw the compassion that there is in the NHS. I lost count of the nurses who went above and beyond. Who would stop at nothing to try to make Ivan comfortable. They tried so hard to look after us, as well as him.

A perfect example was when Ivan went for an operation to have a feeding tube – basically a small plastic plug – inserted into his stomach, because his weight loss was getting so severe, and delivering the medicines had become so painful and so difficult. The sight of your little boy about to go under the knife, even for a relatively straightforward operation like this, is hard to bear. I’ll never forget the warm-hearted nurse, originally from Zambia, who held my hand as I watched Ivan go under the anaesthetic, tears streaming down my face as I wondered if he would ever wake up again. The tube feeding helped us control his weight and measure the drugs more precisely. Sam and I became expert with the tubes, valves, syringes and measurements.

We were always determined not to hide Ivan away. While he could never tell us his likes and dislikes, we sensed that he liked the stimulation of being out and about in the fresh air. So he would be fed on trains and planes, in pubs and restaurants, usually with a gaggle of other people’s children watching. Occasionally one of them would ask if the tube was there because he had been naughty and not eaten his tea.

Just as we experienced a new world of hospitals and tests, so we had to build a new and very different life at home. Looking after someone with Ivan’s condition – unable to move or communicate, doubly incontinent and prone to massive and prolonged seizures – meant huge changes. We needed a hospital bed, syringes, tubes, oxygen, suction pumps, sterilisation equipment and a range of controlled drugs, including powerful benzodiazepines and barbiturates. But above all we needed Olympian levels of stamina, patience and love. We did our best, but after a few months we were close to collapse. We tried to cope mostly on our own, but we simply couldn’t.

I found the phone number of Kensington and Chelsea council’s social workers, and soon, to my great relief, one of them was sitting in our kitchen, notepad in hand, talking about the help that was available.

The list of people who assisted us, in both London and Oxfordshire, is a long one. Children’s hospices like Helen House and Shooting Star, and dedicated public servants like the community nursing team, who Samantha would say did more than anyone to save her life and her sanity.

At the moment of greatest crisis, when we were near to breaking point, I found someone who would become very special in the life of our family. Gita Lama, a young Nepalese woman, had worked for a diplomatic family in London and subsequently registered with an organisation that represented domestic workers at risk of abuse and helped them find new work. She became Ivan’s night carer, and would later help us to look after him at the weekends at Dean. She loved Ivan as if he were her own, and went on to look after our other children in Downing Street. Now with a son of her own, she remains a good friend of the family.

Kensington and Chelsea were incredibly helpful, and gave us carers who stayed in with Ivan several nights a week. Again, these amazing women – the main two were Shree and Michelle – became devoted to him, and close to us.

Yet for all this help, the emergencies continued. We would often exhaust the range of drugs we were allowed to administer at home, and have to drive at breakneck speed to hospital. Children’s A&E at St Mary’s became something of a second home: we would arrive and say a familiar ‘Hello’ to the doctors and nurses. Then the desperate ritual of what became known as ‘the protocols’ – the administration of a range of ever-stronger drugs to control the seizures – would begin.

The last-but-one stage was a drug called Phenytoin, which was administered rectally. The chemical smelt so strong, you could hardly breathe. A glass test tube had to be used because it could melt plastic. What it did to our little boy I could hardly bear to think of, but it worked. From violent spasms, he would go limp and floppy, and we would hold him in our arms, thankful that the ordeal was over.

The final protocol was for him to be rendered entirely unconscious and put on a ventilator. Once this happened there was no guarantee he would regain consciousness. While we came close at times, we never reached this stage.

We learned a lot about navigating the system to try to get the best for your child. When dealing with epileptic seizures in the A&E department, watch out for the four-hour waiting target: there is a danger of an entirely unnecessary hospital admission. (Once you get close to the deadline the staff, quite understandably, want to shunt you onto a ward, whereas it may be that after just a few more minutes in A&E things will be good enough for you to go home.)

Once your child is in a hospital ward, try to order your next batch of drugs hours before you’re due to leave, as they take forever to come. (I used to joke that hospitals were easy to get into, but impossible to get out of.)

When the doctors begin their ward rounds, never leave your child’s bedside; it is the only time you have a real chance to find out what on earth is going on.

Nowhere was parental navigation more essential than in the highly charged world of special-needs education. I had already seen as a constituency MP that special schools were struggling, partly because of their high costs, but principally because of the doctrine of inclusion. At its most extreme, this held that all children, whatever their needs, whatever their disability, should be taught in mainstream schools. Of course it is right that children with special needs who can be integrated into mainstream schools should be able to be, but some children are undoubtedly better off in a special school. In any event, parents should be able to make informed choices. Far too often they simply weren’t being told about what was available. Even though I had seen this happen to others, I rather irrationally didn’t see it coming. But of course it did.

We had heard about an amazing special school called the Cheyne Day Centre, attached to the Chelsea and Westminster Hospital. But when the education adviser from the council came around to talk about Ivan’s schooling they failed to mention it. We then began a battle to get him in; and once he was, we found ourselves having to fight another battle to keep it open. For a time we were successful, and he received the best possible start. Care, stimulation, therapy and education, all in a place where we knew he was safe and where the staff could cope.

After his fifth birthday Ivan needed to move on. While we had fought valiantly, the cost of Cheyne was too great, and a new special school was being built next to Queen’s Park Rangers’ Loftus Road ground, which was near where we lived. We accepted the inevitable and agreed to a place at this school, Jack Tizard, which in the end turned out well.

My friends say that the experience of having Ivan and helping to care for him changed me a lot. I am sure they are right. A world in which things had always previously gone right for me suddenly gave me an immense shock and challenge. I tried to rise to it, but am very conscious of the ways in which I failed. I was always there for the emergencies, good at the technical things, never one to hold back when nappies needed changing or drugs delivered. And I loved Ivan with all my heart. I adored bathtime, bedtime, walks, wheeling him everywhere and nowhere. As he got older I would throw him over my shoulder and make sure he was part of everything we did together as a family. But I know that I lacked the real patience and selflessness that are required to be a truly great carer. And that is the truth about accidental carers: we are not perfect, and there is a lot of muddling through. No wonder so many marriages break down when challenges like this come along.

Yet perhaps that was the greatest discovery of all. While I can think of ways in which I failed, I cannot think of a single way Samantha did. I still marvel when I think of how she managed and cared and loved and coped, not just with Ivan but with the rest of our growing family.

The end is almost too painful to relate, even to recall.

We had had some scares and close shaves. Seizures that never seemed to end. Chest infections that he would struggle to shake off. And then one night, 24 February 2009, Shree woke us to say that Ivan’s stomach had become badly swollen and he was in terrible pain.

This time Sam said she would take him to hospital, and I should stay with the other children. I will never forget holding Ivan in my arms in the cold night air as Sam threw some clothes and blankets on the back seat and started the car.

As soon as they were gone, I started worrying that this time it was different. So I too dashed to the hospital. When I got there the situation had deteriorated badly. A team was standing over Ivan in the emergency room, working desperately to resuscitate him. But he had gone. Adrenalin injections. Defibrillator pads. Nothing worked. He had suffered a massive organ failure. Sam and I were left holding him as the team, visibly moved, backed away to give us some space. We had always known this might happen, but nothing, absolutely nothing, can prepare you for the reality of losing your darling boy in this way.

It was as if the world stopped turning. Explaining what had happened to the children was so hard, because they were so young. And I had to call Gita, who was visiting her family in Nepal; she was desperate to be there with the child she loved so deeply. I called Ed Llewellyn and told him what had happened and that I would be staying at home. I was leader of the opposition at this point and, as it was a Wednesday morning, I was meant to be at Prime Minister’s Questions. What happened later, when Gordon Brown led tributes and the House adjourned for the day, meant a lot to us. It was much more than I had expected, and it showed the real warmth and humanity of Gordon Brown, who had of course suffered in a similar way with his daughter Jennifer Jane, who died shortly after she was born.

The next few days before the funeral were a blur. At least we had to focus on the songs and poems we wanted to remember him by. A friend of Sam’s called Damian Katkhuda, who had a band called Obi, sang and played his guitar in St Nicholas church, Chadlington. It was a beautiful service, with our closest friends and family around us. But there was nothing but darkness for us.

You never fully recover from the loss of a child. But you can steadily learn to cope. I threw myself back into my work as a way of trying to manage. When I look back, I realise that I started working again too quickly. For a while I was too fragile and not in the right state of mind to make decisions. Nothing else seemed to matter alongside what we had lost.

But what is often said about grief I found to be true. While at first you think the gloom will never lift, there comes a time – and for me it was many months later – when some of the happy memories start to break through and you remember what you had, not only what you have lost.

And having Ivan taught us so much. About unconditional love. About our total devotion to each other. About the extraordinary compassion in our health service and the lengths that people go to in order to help. We learned about our strengths, but also our limitations.

Ivan lies buried opposite the church in Chadlington. We take the children there, and tell him how things are going and how much we still miss him. Sam found an inscription from Wordsworth for the headstone that sums up so much of what we feel.

I loved the Boy with the utmost love of which my soul is capable, and he is taken from me – yet in the agony of my spirit in surrendering such a treasure I feel a thousand times richer than if I had never possessed it.