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