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