On the shelf in Ruth Kennedy’s kitchen in Battersea, south London, sit a set of colourful plastic Power Ranger figures of the kind that clutter countless family homes containing small, superhero-obsessed boys. But these aren’t toys. There are no children in this immaculate house young enough to play with them. Instead, they are memories – the cherished possessions of Ruth’s son Louis Dundas, who died of a brain tumour at the age of four in 2008.
Even at his sickest – the point at which Louis was given four weeks to live but survived, often in pain, often suffering, for another 10 months – he still wanted to play with his Power Rangers. His older brother Alfie, then eight, would enact endless battle scenes with them; his 20-year-old stepsister Loulou would dress up for hours as the Red Ranger, his favourite.
“Louis was the baby, the last one,” says Ruth. “He had a tremendous sense of humour, which meant that whenever he was naughty he could absolutely get away with it. He was beautiful, too, very feminine-looking, and he could wrap his father and his older siblings round his little finger.
“What I miss most about him is the way he made me feel. The way he loved me. How I felt excited and alive and the best version of myself whenever I was with him.”
For much of the last year of Louis’ life, he was looked after at home by Ruth and her husband Bruce Dundas with the support of the Great Ormond Street Hospital palliative care team. And it was their experience at GOSH that in 2009 led to the foundation of the Louis Dundas Centre for Children’s Palliative Care – a unit that aims to ‘‘revolutionise’’ paediatric palliative care treatment by funding world-leading research and establishing a gold standard of clinical practice. Palliative care for children is a relatively new field, and it’s dealing with the most difficult subject matter imaginable. The Louis Dundas Centre is particularly focused on the illness experience, pain and symptom management and difficult decision-making about care and treatment.
“I was a mother watching my child die, and I had dozens of questions and yet I couldn’t ask them because I couldn’t say the words out loud,” says Ruth, who is now 50. “I didn’t have the courage.
“How do I tell my other children, for example, that their brother is going to die? Do I tell Louis that he is dying, even though he’s only four years old? If so, how do I do that? Are the doctors really going to let him die slowly, in this unbearable way? One of the things that caused me great pain was that the onus was on us to ask these impossible questions. Right from the start, I felt that decision-making and communication were subjects that needed much greater focus.”
There are photographs of Louis all over the house, frozen forever in that sweetest of ages between babyhood and school. Ruth shows me one taken on the day before he first fell properly ill – the last day of his “normal” life. He’s grinning widely, just off a trampoline. Looking back, she says, there were hints of the hidden disease – a tendency sometimes to support one arm with the other; “the occasional violent vomiting in the middle of the night, which was probably caused by pressure on the brain” – and yet nothing obvious, nothing that would give a parent cause for exceptional concern.
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Ruth Kennedy: 'There is heroism in looking after people at their most vulnerable'
The death of her son Louis inspired Ruth Kennedy to raise money for children’s palliative care
Alison Roberts 13 hours ago 1 comment
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Ruth Kennedy, founder, Louis Dundas Centre for Children’s Palliative Care Matt Holyoak
On the shelf in Ruth Kennedy’s kitchen in Battersea, south London, sit a set of colourful plastic Power Ranger figures of the kind that clutter countless family homes containing small, superhero-obsessed boys. But these aren’t toys. There are no children in this immaculate house young enough to play with them. Instead, they are memories – the cherished possessions of Ruth’s son Louis Dundas, who died of a brain tumour at the age of four in 2008.
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Even at his sickest – the point at which Louis was given four weeks to live but survived, often in pain, often suffering, for another 10 months – he still wanted to play with his Power Rangers. His older brother Alfie, then eight, would enact endless battle scenes with them; his 20-year-old stepsister Loulou would dress up for hours as the Red Ranger, his favourite.
“Louis was the baby, the last one,” says Ruth. “He had a tremendous sense of humour, which meant that whenever he was naughty he could absolutely get away with it. He was beautiful, too, very feminine-looking, and he could wrap his father and his older siblings round his little finger.
“What I miss most about him is the way he made me feel. The way he loved me. How I felt excited and alive and the best version of myself whenever I was with him.”
For much of the last year of Louis’ life, he was looked after at home by Ruth and her husband Bruce Dundas with the support of the Great Ormond Street Hospital palliative care team. And it was their experience at GOSH that in 2009 led to the foundation of the Louis Dundas Centre for Children’s Palliative Care – a unit that aims to ‘‘revolutionise’’ paediatric palliative care treatment by funding world-leading research and establishing a gold standard of clinical practice. Palliative care for children is a relatively new field, and it’s dealing with the most difficult subject matter imaginable. The Louis Dundas Centre is particularly focused on the illness experience, pain and symptom management and difficult decision-making about care and treatment.
“I was a mother watching my child die, and I had dozens of questions and yet I couldn’t ask them because I couldn’t say the words out loud,” says Ruth, who is now 50. “I didn’t have the courage.
“How do I tell my other children, for example, that their brother is going to die? Do I tell Louis that he is dying, even though he’s only four years old? If so, how do I do that? Are the doctors really going to let him die slowly, in this unbearable way? One of the things that caused me great pain was that the onus was on us to ask these impossible questions. Right from the start, I felt that decision-making and communication were subjects that needed much greater focus.”
There are photographs of Louis all over the house, frozen forever in that sweetest of ages between babyhood and school. Ruth shows me one taken on the day before he first fell properly ill – the last day of his “normal” life. He’s grinning widely, just off a trampoline. Looking back, she says, there were hints of the hidden disease – a tendency sometimes to support one arm with the other; “the occasional violent vomiting in the middle of the night, which was probably caused by pressure on the brain” – and yet nothing obvious, nothing that would give a parent cause for exceptional concern.
Ruth Kennedy says of her son Louis: ‘He was the baby. He could wrap his father and his older siblings round his little finger’
Then one day Louis’ left side seemed to seize up. He stopped being able to use his left hand properly. No longer a daytime nap
The treatment did not work; in fact Louis’ tumour grew while he endured it. They’d quickly reached the end of his options, and were referred to GOSH and its palliative team. Just weeks before, Louis had been a happy, lively pre-schooler. Now Ruth, Bruce and their family – Bruce’s four grown-up children from two earlier marriages, and Alfie – were told that their “baby” had barely a month to live.
Ruth has never talked publicly about Louis’ death before. A brand consultant and board director, also known as Lady Dundas – Bruce is Lord Dundas – she counts among her former employers Viscount Linley and today sits on the board of Belmond Hotels and Daylesford Organic, the upmarket foodstore. Together, she and her husband move in some of London’s wealthiest and best-connected circles and are used to solving problems by engaging the help of friends and experts. Sir Elton John played at their last fund-raising dinner (he was Louis’ godfather).
And yet, back then, Ruth found herself repeatedly despairing of her ability to navigate Louis’ highly complex palliative care regime. She was not prepared for the way in which a small child might react to the ghastly side-effects of powerful pain-killing drugs, and no one could prepare the family for the shocking emotional toll it would take on them all.
“It was July when we were told the chemo hadn’t worked, and we had this terrible meeting with his doctors,” says Ruth slowly. “They told us three things at the same time. That we were being given a number of pain-killing drugs to take home with us for Louis. That we should look for a hospice. And that we should contact an undertaker. We were told these things in a gentle, lovely way, but even so, it was too much. It was on that day that I truly believed I couldn’t cope any more.
“Our world shrank to the size of my bed, where Louis lived for the next 10 months with the lights turned down. Looking back, I was living in a permanent state of fear. The thing that terrified me was the pain breakthrough, because when your baby’s back is arching and he’s practically paralysed and he’s screaming and begging for mercy and you can’t cuddle him without hurting him...” She trails off, appalled by the memory, tears flowing. “That meant a horrendous ride to hospital in an ambulance, often with paramedics who were petrified of the pain he was in too.”
The box file relating to Louis’ illness bulges with paper. His medication alone covers a lengthy spreadsheet. Precise amounts of methadone and ketamine, plus half a dozen other extremely powerful drugs, had to be administered according to a strict 24-hour timetable. “But why would anyone think I could do this?” asks Ruth.
“Inside my head I was permanently hysterical. How can a mother of a dying child maintain the kind of calm you need to run this regime? I was lucky – I had a truly amazing nanny in Tracy, who refused to take a single day off for a year, and I had a husband who could stop working without it having a major impact. I had Maggie and Fin from GOSH, experts in palliative care who provided 24/7 telephone support which was a life-saver. But most people don’t have that. How on earth are they supposed to cope?”
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It’s estimated that when Louis died he was on enough pain medication “to kill three men”, and yet he endured it because children are not mini-adults in this context and respond to the drugs in ways that are still not fully understood. It’s a complex subject requiring urgent answers: money raised by the Independent and Evening Standard Appeal will go in part to fund a crucial new research partnership between GOSH and the UCL Institute of Child Health focusing on paediatric pain management.
For Ruth, some of the impossible questions were answered, and some weren’t. Eight-year-old Alfie asked her one day in the car, when neither of them could look each other in the eye, whether Louis was going to die. But she isn’t sure whether Louis truly understood what was happening to
