A legacy for Louis: the next chapter

In our video, 'A legacy for Louis: the next chapter', Louis' parents Bruce and Ruth talk about their experience with his illness and his subsequent death, and the next steps for the Louis Dundas Centre for Children's Palliative Care at Great Ormond Street Hospital (GOSH).

“I truly believe I can cope with his death, but I can’t cope with his pain.” – Ruth Dundas, Founder, The Louis Dundas Centre.

Ruth, Louis’ Mother: “Watching my son die, in the way that he did, was like a form of torture. I think to him, but also for me and for my family. It really was. And if any of that journey, and any of the pain that he suffered and we suffered is avoidable to other people then that’s what I want to achieve.”

Bruce, Louis’ Father: “I had Louis in my arms when he died. It’s a memory you will never ever forget. What we’re trying to do is really help as many children as we can, particularly with pain relief. I think pain in a child to, not only the child obviously, but to the parents, to the people around the parents, friends, relatives, whoever, is absolutely appalling – the most frightening thing.

“When I look at Great Ormond Street and I sit in the reception you see these parents coming in with fear in their face. And when you know your child is going to die that fear increases. So as much as we can do to help that fear, not just for the child but for the whole family, then we’ve done something right.”

Ruth: “What I regret the most about the worst parts of his illness and his death were the fact that I never really knew what to expect, and every time something horrific happened I was completely disarmed by it. And because I was disarmed by it I don’t feel I was able to be there for him as a mother as much as I would like to have been. That’s really – that’s really what I’d like to change more than anything else for other people.”

In 2009 Ruth and Bruce Dundas founded The Louis Dundas Centre for Children’s Palliative Care.

They have brought the clinical team at Great Ormond Street Hospital and a research team at the UCL Institute of Child Health together to create a centre of research, teaching and practice in children’s palliative care.

Professor Myra Bluebond Langner, True Colours Chair in Palliative Care for Children and Young People, The Louis Dundas Centre for Children’s Palliative Care & UCL Institute of Child Health: “Ruth and Bruce had a major, a bold vision, a courageous vision, which not only institutions were willing to appreciate and join with, but also individuals, and provide much-needed support so that we could have clinicians and academics working together to make a difference in the lives of these children.”

Maggie Comac, Clinical Nurse Specialist, The Louis Dundas Centre, GOSH: “The Louis Dundas Centre has set off like a whirling dervish. It’s like a bolt. Something that was just in planning has become the reality. And it’s been planned, it’s been developed and it’s been achieved. And it’s had a massive impact on the evidence base. It’s building a base that has never been there before.”

Dr Finella Craig, Consultant in Paediatric Palliative Medicine, The Louis Dundas Centre, GOSH: “The big difference for me is instead of coming out of clinical situation thinking, ‘This is really tough. Why isn’t there a better way to do it?’ and accepting that there is a problem, I can be part of the solution. We can come away from a clinical situation which is really tough and say, actually, there has to be a better way, and we can be the people to find that better way.”

There are 7 million children in palliative care worldwide. Great Ormond Street Hospital can only see a small fraction of these children.

Freddie was born with Spinal Muscular Atrophy Type 1, a neuromuscular progressive muscle wasting condition.

Dr Craig: “Freddie was referred to us very young, roundabout the age of five weeks, after he’d been diagnosed. Fantastic meeting him early on because then we saw Freddie when he was still really very well, and able to get to know him, get to know his personality, get to know Doug and Kate, and start to think with them about how they would like to care for Freddie, where they would like to care for Freddie and really what their priorities were for Freddie’s life, to make what was going to be an incredibly difficult journey as manageable as possible and as much fun as possible.”

Doug, Freddie’s Father: “I thought he was the most beautiful thing I’ve ever seen. I think the first thing I said was actually, ‘Wow he really looks like my Dad’, and, yeah he was beautiful and amazing and incredible.”

Kate, Freddie’s Mother: “He was just the cheekiest, sweetest little boy, and he was very calm considering everything that was going on – how tired he was, and how uncomfortable he could be at times, he was just so calm and serene.

“Without Fin coming to the house, I just, I can’t imagine how we would have done it because we never would have known what was coming next.”

Dr Craig: “If something happens and you aren’t prepared for it, then it’s a disaster and a crisis. If you know what might happen, if you’ve got a plan for how you might manage that, if you’ve got a plan that will work, and if you’ve also got somebody that you can phone up and speak to immediately and get some advice, that can make all of the difference.”

Kate: “Very early after diagnosis she came round. She sort of painted a picture of the whole of Freddie’s life, what it might look like, various different things that might happen, which was hard to sit here and listen to, and shocking. I think it’s difficult for them to know how much they should ‘drip feed’ it or give it to you straight, but she actually gave it to us straight and that was brilliant because straightaway we knew exactly what was going to happen.

“They used to come in and they used to give us lots of energy actually because they’d praise us so much on how we were doing things for Freddie, and it empowered us to give Freddie the quality of life that he deserved.”

Doug: “I’m not from a medical background, Kate’s not from a medical background. The stuff that we were doing was due to Great Ormond Street. They taught us how to do everything – how to keep his airway open with suctioning, how to use a non-invasive ventilator at night, how to pump feed him with a feeding tube. All of these things are incredibly difficult to do and a real skill, and without Great Ormond Street and the community team around them, we wouldn’t have been able to do that and Freddie would have been in hospital without the attention and care that he would have needed to have an amazing quality of life.”

Kate: “We got so good at giving Freddie’s care at home because of the support from the Palliative Care team that we actually, with Fin, decided that we would stay at home on our own, which was actually really intimate and magical and special, and although that might sound really strange it was actually quite beautiful.”

Freddie died on 9 June 2014. He was 14½ months old.

Doug: “At the end of Freddie’s life we wanted him really just to be comfortable. That was the most important thing. We wanted it to be just us as immediate family, and we wanted it to be peaceful and quiet and for him just to be as happy as he could be and to know that we were there.”

Kate: “We actually find it very comforting to think that the way we spent our time together was that, we looked at in depth rather than in length, and we feel that, you know, no life that love had been given and received as deeply as it was between the three of us could be anything other than complete.”

Dr Craig: “One of the really important things about the Louis Dundas Centre is that anything that we do here that’s important and significant we need to share, because it’s not just about making things better for us and our patients, it’s actually much, much bigger than that. It’s about trying to make things better for everybody. And what’s really fantastic is, we’re really at the beginning of this programme. If we’re doing so much now, it’s going to be absolutely fantastic and the number of people we will have reached in another year, in another two years but think in another 10 years, it’s huge.”

Prof Bluebond-Langner: “The funding that we’ve received has allowed us not only to make a bold start, but also an ambitious start. And to realise the full benefit of that ambition, that bold stroke, we need to continue to work further. We haven’t even scratched what’s needed in the evidence base, and most of all we need to look at better pain and symptom management, because if we fail in this regard we will have failed these children and ourselves.”

Bruce: “Our charity started with Louis and Ruth and myself. It has now moved on and must move on. It now has to become a global institution that looks after children around the world with research and clinical expertise. It’s not easy, and it’s not quick, but it can happen and it will happen.”

Ruth: “I think after Louis died I really came to understand that you should never judge the value of a life by its length. Even if a life is really short it can still be full of meaning, and it can still be full of beauty. But what is important is that everybody is comfortable with the way that life is being lived and I think my, my hope for other people and for the beneficiaries of the research that’s conducted from the centre will be that people will feel that they chose how their child lived out his last days, that they will feel that they weren’t alone, that they were heard, and that they were working in partnership with medical teams and carers. And that if they’re successful in doing that then they’ll feel that they accept that sometimes death is inevitable. I think it’s a real shame to think that cure is the only success in life. We should really value quality of life, and that’s really about how we live and not how long we live for.”

We have raised £6 million and established the Louis Dundas Centre. To continue our work we need to raise another £2.4 million. We need your help to see this project through.