Connie Yates on the fight to save her son Charlie Gard, losing control, and the power of hope
November 2, 2020. Series 2. Episode 14
In this final episode of series two I talk to Connie Yates, mother of Charlie Gard who in 2017 was at the centre of a crisis and debate that stretched from the High Court in London, to the Vatican, the White House and into homes across the world. That debate raised issues of medical ethics and the fundamental rights of parents. But for Connie and partner Chris it brought only pain. For the question being asked was the most heart rending imaginable – should their son be kept alive to receive treatment that might extend his life?
This is ultimately the story of a mother and father’s unbelievable determination in the face of systemic resistance. From Charlie’s diagnosis to a final court case to decide where he would die, Connie charts the full shocking detail of their fight against Britain’s medical and legal establishment.
This is, of course, ultimately a story that ends in heartbreak. But it’s also a story of hope and of a mother’s fight for control against a tide of unrelenting crisis.
An episode full of lessons and perspective for anyone facing their own challenges.
Charlie Gard Foundation: https://thecharliegardfoundation.org/
This was our longest episode so far – and for good reason. Connie Yates and her husband Chris are remarkable people. They faced the unimaginable – a devastating diagnosis for their first born. But what singles them out is their determination to fight against the consensus view every step of the way – each step a crisis in its own right. To get their sick son to Great Ormond Street, to refuse to accept that his condition was untreatable, to raise over £1m to fund the treatment in the US and to fight in every court in the land to get him that treatment. And then, when time ran out, to fight in the courts a final time so that Charlie might die at home and in peace. Connie’s background as a carer for disabled children (her Mum remarkably did the same job) clearly gave her a certain perspective. But in the end, it was an inner determination – a stubbornness – that drove Connie to fight against the medical and legal systems. Her greatest frustration came when the courts intervened to stop Charlie from being transferred from one hospital that wanted to end his life to another that wanted to save it. “I had no idea the courts could do that,” she says.
Most of us, thankfully, will not live the heart-breaking crisis that Connie and Chris Yates faced. But in their story there are lessons, I think, for anyone dealing with a crisis. First the power of hope – the fuel for any long running campaign. But also the power and importance of control. Quite often we talk in this podcast about the need to work out what you have control over and what you don’t. No-one would have criticised Connie if she surrendered to the system much earlier in her story. But she did not … instead taking each defeat as a challenge to find another way forward.
As Connie says: “It’s not that I wanted the control, I just wanted the best for my baby.”
Stream/Buy ‘Allies’ by Some Velvet Morning: https://ampl.ink/qp6bm
Some Velvet Morning Website: www.somevelvetmorning.co.uk
Host – Andy Coulson
Producer – Louise Difford
00:00:00.00 Intro music
00:00:19.07 Andy Coulson:
Hello and welcome to Crisis What Crisis? a new podcast designed to be a useful field guide as we all try to navigate and come to terms with a dramatically changed world. Whether it’s personal, professional or both, crisis is without doubt, the new shared experience. I’m Andy Coulson, a former newspaper editor, Downing Street Director of Communications and one time inmate of HMP Belmarsh. For the last four years I’ve been trying put all of my experience, the good and the bad, to use as a strategic advisor to business leaders and I can tell you that the bad has been just as useful as the good. And that got me thinking that there are plenty of great podcasts out there where you can hear stories of success, there are far fewer where you can benefit from the experience of those whose lives have properly unravelled.
00:01:03.13 Andy Coulson:
So, in Crisis What Crisis? I’ll be talking to the embattled, shamed, courageous, ruined, damaged, resilient, unlucky and lucky survivors of crisis. Some names will be familiar, some less so, but all our guests will talk about their crises honestly, often with humour, but always in the hope that what they have to share might be useful to anyone facing down their own demons and challenges. Put simply these are crisis stories worth sharing. If you agree and enjoy what you hear, please do give us a rating and review, that way even more people will hear them and that in the end is what it’s all about.
00:01:43.14 Andy Coulson:
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00:02:17.09 Andy Coulson:
The final episode of this second series is longer than usual and that’s because the story we’re going to hear together is about a crisis like few others, frankly. Joining me today, to tell that story, is the remarkable Connie Yates. In 2017 Connie and her partner, Chris Gard, were at the centre of a crisis and a debate that stretched from the High Court in London to the Vatican, the Whitehouse and into millions of homes across the world. That debate posed fundamental questions on medical ethics and the rights of parents. But for Connie and Chris it brought only pain, for the question being asked was the most heart-rending imaginable: should their son be kept alive to receive treatment that might extend his life.
00:02:56.20 Andy Coulson:
Charlie Gard was born on August 4th 2016. In October of that year he was diagnosed with incurable MDDS, Mitochondrial DNA depletion syndrome, a rare condition that causes severe and rapid muscle weakness. He was transferred to London’s Great Ormond Street Hospital and placed on mechanical ventilation, but then came some hope. A New York based neurologist, Professor Hirano, agreed with Charlie’s doctors to proceed with a pioneering treatment called nucleoside therapy. It wouldn’t cure Charlie but it may have extended and improved his life. But in January 2017, doctors at Great Ormond Street changed their mind believing the treatment to be futile. Instead they began conversations with Connie and Chris about ending Charlie’s life support. When they refused, Great Ormond Street turned to the High Court for permission to effectively take Charlie’s life out of his parents’ hands.
00:03:49.04 Andy Coulson:
The courts supported the doctors but Connie and Chris challenged that decision in the Court of Appeal, The Supreme Court and the European Court of Human Rights. They also started a crowdfunding campaign to pay privately for the treatment in the US and by the end of April had raised the £1.3 million needed. But the courts continued to back Great Ormond Street. The Pope supported Connie and Chris’ cause, as did Donald Trump. Monuments, landmarks and buildings around the world lit up in support for Charlie. But in July, after Professor Hirano conceded that it was now too late to help Charlie, his parents reluctantly agreed to the withdrawal of his life support. On July 28th 2017, Charlie died, just a week before his first birthday.
00:04:34.06 Andy Coulson:
Since then Connie and Chris have campaigned via the Charlie Gard Foundation, set up with the money raised in their son’s name to fight Mitochondrial disease and to campaign for Charlie’s Law, a private members bill designed to protect parents’ rights when a child falls seriously ill. Connie, welcome to Crisis What Crisis? How are you?
00:04:53.17 Connie Yates:
Hi, I’m okay thank you. Tired with a new-born.
00:04:58.00 Andy Coulson:
Yeah, well we should explain, Connie, that just twelve weeks ago you gave birth to a healthy boy, Oliver, who, if our last conversation is anything to go by, may well make himself known during this podcast.
00:05:08.11 Connie Yates:
Yeah, he may well.
00:05:11.17 Andy Coulson:
Connie, after so much pain and difficulty, Oliver’s safe arrival must be a source of incredible joy for you and Chris.
00:05:21.22 Connie Yates:
Yeah, it definitely is. It puts a genuine smile back on our faces.
00:05:26.08 Andy Coulson:
Yeah, I’ve read a quote from you that I thought was very moving, you said that for the first time in years you could smile and mean it. That it’s not the first time you’ve smiled but it’s the first real smile for a very long time. And that’s how it feels?
00:05:42.10 Connie Yates:
Yeah, it’s a smile that more comes from the heart, rather than just a fake plastered on smile, really.
00:05:51.22 Andy Coulson:
Which is kind of what you had to do for such a terribly long time. But I know that Oliver’s arrival has made you even more determined to fight for the change of law in his big brother’s name, we’ll talk about that more later. But can we go back to August 2016 and Charlie’s arrival. He was born, seemingly, healthy and you had a number of weeks at home together before you became concerned that something was wrong.
00:06:24.18 Connie Yates:
00:06:26.20 Andy Coulson:
Tell us about those early weeks.
00:06:32.23 Connie Yates:
They were just amazing. You know, he was our first child and you never really know what it’s like to have a child until you have a child and he was just perfect. He was a very well behaved baby as well. Not like his brother! But yeah, there was nothing really wrong in the pregnancy. I had slightly increased amniotic fluid, but it wasn’t anything of any concern so he was born, he had an APGAR score of nine, everything was perfect at the hospital. The only problem we had, initially, was he failed his new-born hearing test. So we were then referred to audiology and that’s when we found out that he was deaf. We had no deafness in the family or anything so that came as a bit of a shock.
00:07:23.11 Connie Yates:
And we actually really struggled with that at the time. And it’s silly now because we just look back and just think, if only that was the only problem that we had. Charlie was fitted with hearing aids, quite quickly actually, I was quite impressed with how it was all done. And obviously it’s hard to tell with a baby whether they can hear or not but the audiologist seemed to think that he could because when we said anything to him he was turning his head looking at us and things like that. But we were also referred for cochlear implants, which would actually enable him to talk and hear like a normal little boy. But yeah, as I said, initially we really struggled with that but in the end the technology has advanced that much, and with it being 2016 at the time, there was a lot that they could do.
00:08:17.16 Andy Coulson:
This is one of the things that strikes me about your story, Connie, yours and Chris’ and Charlie’s story, is that it’s kind of layers of crisis. You have, what you think is, a healthy first child. And you discover, as you’ve just described, that he’s deaf, first of all that he has hearing problems and that he’s deaf and you think well that for most people is a significant crisis. And then of course, not that long after, you discover the terrible truth of his diagnosis. When was the transfer across to Great Ormond Street?
00:08:59.19 Connie Yates:
So this is the 11th October. And they kept him in the induced coma, they filled him full of antibiotics in case it was an infection and then they started to wean down the sedation and he was doing quite well. He was breathing on very, very minimal support so they started talking about taking him off the ventilator and just seeing how he went. So they did that on the14th October, so just three days later, that’s my dad’s birthday, I remember that. So Chris went there first and he rang me and he said, ‘He’s doing well’. So straight away I rang my dad and said, ‘Happy birthday, Charlie’s doing well, he’s breathing off the ventilator.’
00:09:44.19 Connie Yates:
And I very quickly got dressed and went down there, because in ICU you can’t stay with the child. It’s different to your local hospital, so we were in a room very close by and we always took turns so that one of us would be with Charlie. So I very quickly got dressed and went down there and although he was breathing well again, his lactate went back up again. And knowing that he’d had all the antibiotics and everything, I think that was a bit of a concern for them.
00:10:11.02 Connie Yates:
But initially, arriving at Great Ormond Street Hospital, we were amazed at all the tests that he had done, all the doctors that we had seen, you know, I really had to fight at our local to have something even like an ultra sound or an ECG and things like that. So I was amazed at the resources that the hospital has. There was quite a few times that we were asked if Chris and I were related, which shocked us a bit because we’re definitely not related. I suppose they were thinking maybe it was a genetic condition and sometimes cousins do get together and these things are more common. So I think they were just… I think every doctor that came along, whether it was a cardiologist or a neurologist or whatever, they were asking us.
00:10:52.24 Andy Coulson:
They would ask that question?
00:10:54.12 Connie Yates:
Ask the same question, yes.
00:10:55.19 Andy Coulson:
Okay, so you would think that that’s a question maybe, that does need to be asked by someone at some stage, once?
00:11:01.13 Connie Yates:
Yeah, maybe, yeah. But it’s a shame they didn’t write it on the notes because we got it a few times, yeah. But anyway, definitely not related and so they then put Charlie back on the ventilator because of the lactate and that’s when they then took us into this side room. We always call it the room with the tissues, and that’s when they said we think its Mitochondrial disease and there’s no treatment and there’s no cure.
00:11:32.19 Andy Coulson:
Those were the words, Connie, were they?
00:11:35.12 Connie Yates:
Yeah. One, we’d never heard of Mitochondrial disease before. And two, we couldn’t believe that in 2016 that there was this disease where there was nothing you could do for it. I always thought getting a cancer diagnosis would be absolutely devastating but the majority of the time there is usually a treatment option, as long as it’s caught early enough. So even with that it feels like there’s some hope. As devastating as it is and obviously I’ve had cancer [within my] friends and family as well, so you know, I’m don’t mean to say anything against anyone who has cancer or anyone receiving a cancer diagnosis, I know how devastating that can be. But just to be told straight away, like ‘your baby has this, we think your baby has this and there’s nothing we can do’, it’s you know… and they said to us, ‘we will try the ventilator two more times and that’s it and we won’t put it back in again’ so…
00:12:36.19 Andy Coulson:
Sorry, just so we’re clear, up until this point no one had suggested to you that your child was facing something that was life threatening in that sense, in the first conversation… Again this is not, we’re not seeking to be ultra-critical at this stage, we’re just wanting to set out the facts, if you like. And you’re taken into the side room and you’re told that your child has something that you’ve never heard of before and that there’s nothing that can be done?
00:13:12.12 Connie Yates:
00:13:12.17 Andy Coulson:
And that ‘we’re going to try ventilating your child twice to keep him alive but we won’t try a third time’.
00:13:20.20 Connie Yates:
00:13:21.23 Andy Coulson:
That’s the conversation?
00:13:24.05 Connie Yates:
Yeah, ‘once we remove it we won’t put it back in’.
00:13:27.04 Andy Coulson:
So how did you both react?
00:13:30.20 Connie Yates:
Oh, just absolutely devastated. It’s almost, I was so shocked that I almost can’t remember that moment now. It was so traumatic that I don’t know, I can’t even explain it really. Just utter devastation, like speechless. Yeah, my jaw dropped to the floor.
00:13:57.03 Andy Coulson:
Yeah, and when your child’s critically ill, everything changes, right? The world becomes sort of slightly out of focus?
00:14:03.15 Connie Yates:
Yeah. It’s a bubble.
00:14:06.19 Andy Coulson:
Yeah, I mean, it’s an impossible question to answer on one level I suspect, but how did you cope in the twenty-four hours after a piece of news like that? How did you cope?
00:14:21.01 Connie Yates:
I didn’t cope very well at all. I couldn’t eat anything; I couldn’t drink anything. Yeah, I just really didn’t cope. Our little baby, who we thought would be here forever, who we thought would bury us, you know.
00:14:34.18 Andy Coulson:
Of course, utterly unnatural.
00:14:37.11 Connie Yates:
We’d pictured them at school and pictured them getting married and making us grandparents, you know. Their whole life is kind of thought about isn’t it, as soon as you see that pregnancy test? But initially when I looked up Mitochondrial disease a lot of what I read said that it’s caused by Mitochondrial DNA, which is actually to do with the mother’s egg, and potentially every child that that mother has would then have Mitochondrial disease. But obviously I know a lot more about it now and it can also be caused by nuclear genes too, which is what actually happened in our case.
00:15:12.07 Connie Yates:
But initially I felt that it was my fault. And again, I don’t want any mum that has a child with Mitochondrial disease due to Mitochondrial DNA to feel guilty or anything, that’s just how I felt initially. I don’t feel guilty now because we weren’t aware that we’d given Charlie this faulty gene, you know, it wasn’t anything that we’d knowingly done. So you know, I don’t feel that guilt now, I feel a lot of guilt for other things but I don’t feel that because that was out of our control and that was, you know, as I said, we didn’t have knowledge of it. But yeah, I did feel a lot of guilt at first.
00:15:52.08 Andy Coulson:
How quickly did you go into research mode? Because that’s what yourself and Chris did. You went off and you started reading and you wanted to understand exactly what Mitochondrial Disease meant, what it is, what it does to a child. How quickly did you get to that stage?
00:16:15.19 Connie Yates:
Well obviously straight away we went back to Charlie, you know, showered him with tears, held his hand, just after the news we’d got. But you know, as soon as… you know, it was still that very day I was researching it, Mitochondrial Disease.
00:16:31.06 Andy Coulson:
You’re doing what every parent does when their child is ill, you’ve got the most extreme, as I say, tragic, example of it. But you’re immediately on to Google.
00:16:44.16 Connie Yates:
Yeah, Dr Google.
00:16:45.19 Andy Coulson:
Dr Google, and you’re trying to work out what this thing you’d never, it’s a word you’d never had in your vocabulary before…
00:16:52.24 Connie Yates:
Yeah, I mean parents do become experts…
00:16:53.13 Andy Coulson:
…what it means.
00:16:55.24 Connie Yates:
Parents do become an expert in their children’s condition. I feel very strongly about that.
00:17:01.07 Andy Coulson:
Absolutely, yeah. So emotions obviously must have been incredibly high for everyone involved with Charlie’s care in those first weeks. Not least the nurses and doctors that are around his bed. You obviously more than anyone in that place at that moment. How would you characterise your relationship with the professionals around the bed at that stage, if I can put it that way?
00:17:32.16 Connie Yates:
Honestly, I cannot praise them enough, we could not have done it without them. They held us up and they became like family. You know, we were there twenty-four, seven between us but for nine months. And I feel like I’m tearing up now just talking about them, just they just meant so much to us. And they were a big, big part of Charlie’s life and they were a big part of our life. And we were going through the worst thing in our life. But they still made us smile, do you know what I mean? And yeah, they do an amazing job, absolutely amazing job. Yeah, they deserve lots of medals. Because being in the intensive care is a very traumatic place to be and to choose to work there, it takes a special sort of person. And it’s impossible for them not to get attached as well. So you know, they feel it too, they cried with us, they smiled with us. But what everyone’s heard about our story, all these court battles and everything like that, you wouldn’t know if you were there with us in intensive care, you wouldn’t know there was…
00:18:36.01 Andy Coulson:
And that, I think, is really important that we set out, as we get into the rest of this story, because as you say, there’s a sort of conflict, isn’t there? But at no point was any of that, from your perspective and from Chris’ perspective, about the care in the hospital that he was receiving from the professionals at his bedside. You’ve got nothing but praise for those individuals and for those professionals, right?
00:19:03.11 Connie Yates:
Yeah, I mean, I believe it was a management decision by people who didn’t even know Charlie. You know, but I don’t know. So we can’t really say that but that’s what I believe.
00:19:13.15 Andy Coulson:
Yeah, yeah. When did you first sense a sort of shift in view, as you say, from management? I mean, did you have any kind of involvement with hospital management, if you like, in that sense before you got to the point where there was clearly a difference in opinion? Was that a slow process or was that a sudden process?
00:19:39.07 Connie Yates:
Well I mean, I’ve got to cut a very long story short or we’ll be here for literally six hours, probably. But we sort of got to December time and I’d thoroughly researched this nucleoside therapy. I’d spoken to lots of other parents whose children were on the same medication. I’d been sent the videos and photos of children before and what they were like now. And we’re talking children on a ventilator, just like Charlie, and then children running in a park. So this really seemed like a miracle medication. So you know I had every research paper I possibly could printed off about it, all the research that was done. And obviously I’d spoken to Professor Hirano at that point. Initially the team didn’t really want to hear what I had to say about it and you can’t really blame them, you know, I’m only a parent, I’m not a doctor, I’m not a professional.
00:20:38.24 Connie Yates:
But then Professor Hirano said that he would speak to them. And that’s where it sort of changed. And they then seemed up for trying the treatment in Great Ormond Street Hospital for a period of three months. And that would have started in January. So Professor Hirano had this conversation with the doctors and then they said they’d give Charlie an MRI scan, if there was no irreversible brain damage then we will get to the Ethics Committee and likely potentially go ahead with the medication in Great Ormond Street Hospital. So we were absolutely over the moon.
00:21:16.22 Andy Coulson:
Shall we just briefly explain that process then, that the doctors have said yes, this might well be worth trying but we need a sign off, if you like, from the hospital’s Ethics Committee.
00:21:29.05 Connie Yates:
Yeah, so first we need the MRI scan and then the Ethics Committee. So Charlie, I said, please can we do the MRI scan asap I just wanted to know. And Chris and I had had that conversation between ourselves, if there was too much irreversible brain damage then we wouldn’t be pursuing the treatment anyway. So we had his MRI and the doctor came to the bed space, and that’s usually when you know it’s good news they don’t take you in that side room with the tissues, and they said the MRI scan was clear. So then ethics was then booked for a few days’ time and that was it. And so I was literally just over the moon. Because you know, they did say that Ethics will probably agree to it because we’re up for this, basically. So it was pretty much going to happen. So it’s just, we were crying with happiness. Other than when Charlie was born, when I did cry with happiness, but this was, this was beyond when Charlie was born, crying with happiness, you know. I was inconsolable crying with happiness which I didn’t even think was a thing. But…
00:22:35.17 Andy Coulson:
Yeah, and let’s be clear, you’re not crying because you think you’ve discovered a miracle cure, you’re crying because as a mother and obviously in Chris’ case, as a father, as parents, you are able to give your child some hope.
00:22:50.21 Connie Yates:
Yeah, exactly and…
00:22:52.05 Andy Coulson:
The possibility of a future.
00:22:53.17 Connie Yates:
Until you’re in that situation you don’t understand the power of hope, it’s unbelievable, so, so powerful. So yeah, we had that hope and that felt amazing because we didn’t have any of that. And despite all the research that I had done I kind of felt like I was talking to a brick wall.
00:23:13.22 Andy Coulson:
When was ‘best interests’, when were those words first used?
00:23:18.22 Connie Yates:
It was probably around November time.
00:23:21.16 Andy Coulson:
00:23:23.00 Connie Yates:
Yeah, I think, so round about… so after we got the diagnosis really. It was all ‘let’s just get the diagnosis, let’s find out what’s wrong’.
00:23:31.11 Andy Coulson:
Yeah, soon after the diagnosis the words ‘best interests’ because those words are obviously at the heart of this story but when I think of, you know, that loss of control element that you and Chris had to endure, hearing those words that ‘what’s in the best interests of your child’ may not be in your control must have been, in and of itself, an incredibly painful thing to hear and a painful thing to try and come to terms with. And of course, in a way you didn’t did you? Because that’s where you got your fight from. So do you remember how you felt the first time someone used those words with you?
00:24:19.23 Connie Yates:
Well, it’s almost, I’m his mum and Chris is his dad and how can you say that we don’t have his best interests at heart? He’s our baby, you know. That’s hard, that’s hard to hear. And like I said before, you know, it just felt like I wasn’t being listened to and I would have these research papers but no one would read them, you know? So we didn’t have any say in what happened. And it’s just a horrible, horrible loss of control. And it’s not because I wanted the control, I just wanted the best for my baby.
00:25:02.11 Connie Yates:
And I kept looking at it, if this was me, would I want to try this medicine? And I was like, yes, I would. And I was saying to Chris, ‘would you want to try it?’ And I’m asking my parents, I’m asking my friends, you know, I was asking the nurses. I was constantly asking people for reassurance to make sure I was doing the right thing. And everyone always agreed. Everyone who met Charlie and saw Charlie always agreed. I think it’s worth saying that this medication was just a powder that would have gone into his milk. It wasn’t anything…
00:25:32.12 Andy Coulson:
It wasn’t invasive.
00:25:33.13 Connie Yates:
No, not invasive and not harmful. The only known side effect was dose-related diarrhoea which you can get from antibiotics sometimes, or KFC even. And usually that was older people that would have that side effect, children weren’t really shown to be affected at all. So the fact that this wouldn’t have harmed him… yeah…
00:26:00.05 Andy Coulson:
I think it’s too easy to say, Connie, that any parent in those circumstances would behave in the same way. I think a parent’s protective instinct is incredibly powerful, obviously, one of the most powerful human instincts, but you’re a carer for young children with learning difficulties aren’t you, professionally?
00:26:21.15 Connie Yates:
00:26:22.06 Andy Coulson:
At this stage do you think your professional background was helping you in some way? Or is there something else, frankly, in your history, that you think was giving you, is turning that already very powerful instinct into something that was driving you in a different kind of way?
00:26:43.20 Connie Yates:
Yeah, well you know working a lot with disabled people their lives are not any less valuable than ours. You know, they’re happier than we are. A lot of them wouldn’t have all the stresses that we have of mortgages and paying bills and all these…. You know, life is hard and they can be so, so happy and I don’t know, I think that taught me that they’re still people, they’re not any less of a person because they’re not able to do certain things. So I think… and a lot of people were, because of the way that society used to be and the way that a lot of people were just locked away in institutions, I mean, it’s changing now, thank god, but they weren’t as accepting of disabled people before. But obviously my mum did the same thing, that’s probably why I ended up going into the same career path but I’d always…
00:27:50.24 Andy Coulson:
So your mum did essentially a similar or the same job?
00:27:55.01 Connie Yates:
Yeah, I mean, she didn’t do that before I was born but after I was born that’s…
00:28:01.02 Andy Coulson:
Yeah, and you remember that as a child, do you? You were aware of what your mum was doing for a living and the incredible work she was doing?
00:28:08.15 Connie Yates:
Yeah, and then I’d sort of followed in her footsteps. And I taught them independence, like travel training or cooking or washing and things like that. You know trying to improve their lives so that they could eventually move out of home one day and live on their own and lead a more independent life and a better quality of life. So that’s my background and so maybe that’s something to do with it, I don’t know.
00:28:45.08 Andy Coulson:
Yeah, well it sounds clearly that when you’re in the hospital environment like that and you’re dealing with what you’re dealing with, of course it’s your son, it doesn’t bear comparison to anything to that you might have experienced professionally, but what you had in your mind’s eye, if I’ve understood this correctly, was that whatever we can do for Charlie is worth doing. You know, whatever improvement we can bring to his life is worth fighting for.
00:29:15.02 Connie Yates:
Yeah, well especially with the improvement I was seeing other children have. I mean, we’ll get to more to the end, a bit later on. But if it hadn’t worked then we wouldn’t have continued. You know me and Chris had these difficult conversations and we agreed with them. And we also said, if this harms him, if he’s suffering during treatment we don’t have to continue, do we? Because this would have gone down as a study, basically, to help others in future as well. But we didn’t want to do that if it caused him to suffer. We wanted to be able to stop at any time if we wanted to. So he was always, his best interests, in our eyes, was always at the forefront of our minds too. We just wanted that opportunity to save his life or improve his quality of life and if it hadn’t worked then we’ve tried everything. And I think that’s very important as well, just to know, even if you lose a child, that you did absolutely everything you could.
00:30:17.03 Andy Coulson:
Of course. So tell us, Connie, about the conversation then that you are, in which you are told that the treatment is not going to happen.
00:30:29.18 Connie Yates:
So basically it was the morning of the Ethics Committee and we were just told that it was cancelled. I think the chaplain came and told us, if I remember correctly. And we were like, ‘why, why?’ But then one of the doctors, actually no, Friday, at about 5.00pm, I think one of the doctors said to us, ‘It’s not going ahead, that’s not what I’ve heard, they don’t want to do the treatment anymore.’ And we were like, ‘…what?’ And he was like, ‘…speak to the others’ I can’t say names, obviously because of court orders but ‘…speak to this doctor’ but that had to wait until Monday because that doctor had gone home.
00:31:06.13 Connie Yates:
And then we had a meeting on the Monday, if I remember correctly and it was, ‘This has to be a team decision, and not all the team are on board’ when we’d previously thought they were. But I think there was maybe one doctor who wasn’t up for doing it. And that was it, they weren’t going to do it anymore. But suggested to us that we go to Professor Hirano and have the treatment done in America. And I said ‘That will cost over a million pounds, private healthcare in America, especially having to start off in intensive care, would be extortionate and we don’t have that sort of money’, at all, nowhere near that sort of money.
00:31:55.07 Andy Coulson:
Well, just out of interest, Connie, what was the NHS cost, do you know, if the treatment had gone ahead?
00:32:01.01 Connie Yates:
That was only £3,000. It’s £1,000 per month.
00:32:06.01 Andy Coulson:
And you were asking for a three month trial.
00:32:08.09 Connie Yates:
Yeah, and we offered to pay that ourselves, but they said that we didn’t need to, that they could do it on a research grant. But anyway, so that’s a horrible part of it as well because it was so cheap and it could have been done in January and it would have been over by April. But anyway, so…
00:32:24.23 Andy Coulson:
But the conversation actually is not, ‘we’re not going to do it so you must pay for it here’ the conversation is ‘we’re not going to do it, you must pay for it to be done in America’ and the cost of that is in excess of a million pounds?
00:32:40.01 Connie Yates:
Yeah. I mean, we didn’t know the actual cost at that time but obviously just I remember actually saying, ‘don’t be ridiculous’. At first and the doctor said to me ‘…it’s not impossible we’ve flown kids to Australia before, we fly kids to America all the time’. And by the end of that meeting I said ‘I’ll get that money’. So literally from me saying don’t be ridiculous, I was like, I will get that money. Maybe they thought we wouldn’t get the money, I don’t know.
00:33:12.19 Andy Coulson:
And of course, there’s another factor here, isn’t there, that’s important. You’re acutely aware that the clock is ticking.
00:33:20.11 Connie Yates:
00:33:20.24 Andy Coulson:
Right, you’re acutely aware that in the time that they are suggesting that you go off and raise a million pounds that’s time that Charlie’s not having his treatment and that’s time that Charlie is probably getting worse?
00:33:35.07 Connie Yates:
Yeah. That’s always the risk, yeah. I mean, obviously, yeah, we didn’t know that at the time, I mean, we didn’t know if we would be able to raise all that money but we were going to give it a [beep] good try!
00:33:53.07 Andy Coulson:
I mean that quickly gathered pace and very quickly the story caught people’s imagination and it caught people’s imagination because it’s everyone’s nightmare, obviously, any parent’s nightmare, but also it just went straight to the heart of this argument of where does a parent’s control over the future, the life, of their child begin and end? Did you, when you were first just trying to raise the money to get Charlie to America did you appreciate the kind of debate that this would create? Did you appreciate at that stage, the ethical element of this story?
00:34:47.01 Connie Yates:
I don’t think so because our Ethics Committee was cancelled as well. So we didn’t even have that ethical point of view from the hospital. I almost wish that that had gone ahead to see what they would have said. They may have agreed and said let’s give it a go. But yeah, so that was cancelled. But it’s worth saying here as well that our doctor, again, I can’t say names, said to us ‘if you get the money we’ll drop the court case’. Because he said, ‘we’re going to have to go to court because Charlie can’t be here forever’ and we totally understood that. So we just put all our energy into raising this money. I didn’t think…
00:35:28.22 Andy Coulson:
So let’s just understand that. You’re being told that the only way that this is going to happen is if you go off an raise the money but you’re also being told, you know that the clock is ticking for your son in any event, but you’re also told that the hospital will be going to court because they can’t let this go on forever. So are you told, are you given a time frame in which you have to raise this money before the court case starts? How did the timeline work?
00:35:59.22 Connie Yates:
There was no real time frame because it was just ‘we will be going to court and if you get the money then we will drop the court case’. And I kept saying, ‘When are we going to court, next week, next month, like when is it going to be?’ And we eventually got the court papers handed to us at 5.00pm on a Friday, seems to be a bit of a pattern there.
00:36:22.04 Andy Coulson:
How are you surviving, the pair of you, at this stage?
00:36:25.17 Connie Yates:
I actually don’t even know. I had such minimal food, I had so much stress it’s unbelievable. I just think your body just goes into survival mode. And somehow you survive every single day your brain still functions every single day and you just do it because what other option have you got, really?
00:36:49.14 Andy Coulson:
00:36:51.01 Connie Yates:
Yeah, I just learnt as much as I possibly could.
00:36:54.15 Andy Coulson:
Where were you getting support from?
00:36:56.24 Connie Yates:
Friends and family and the staff in the hospital that were looking after Charlie and us.
00:37:03.11 Andy Coulson:
Yeah. So those same people around Charlie’s bed were absolutely looking out for you and Chris and providing support for the pair of you.
00:37:12.06 Connie Yates:
But my mum brought food up to the hospital. My mum came every day, she brought food up every day, trying to make me eat. But I think I had a bit of PTSD with that. Because I was in the family room one day, which is right next to intensive care and the emergency alarm went off and it’s this deafening sound and you think, oh my god is that my baby? And this is before we knew what was wrong with Charlie but it’s a haunting sound. And every parent’s the same, you see the look on their faces if they’re in the room with you, you know, whose child is that? And so you sort of run down the corridor, is it my baby?
00:37:43.18 Andy Coulson:
Constant alert, yeah.
00:37:45.01 Connie Yates:
Yeah, exactly and it wasn’t Charlie and you’re like ‘oh, thank god’ and then you’re like, ‘oh that’s someone else’s child’ so you feel guilty that you’re like oh thank god it’s not my child. Of course you don’t want it to be your child but you don’t want it to be anyone’s child. So I was eating one day in the family room and that happened. And I then really struggled to eat after that point because I don’t know, I don’t know if I connected it to it somehow, subconsciously, I just didn’t want to…
00:38:14.06 Connie Yates:
When I was away from him I felt terrible, I felt fine when I was next to Charlie. Even just down the corridor, meters away from him, I then couldn’t feel like I could cope again. But we weren’t allowed to eat in intensive care obviously. But actually, in the end, the nurses used to sneak me food because they were getting worried because I was just shrinking and they were like, ‘you need to keep your strength up, you can’t fight for him if you’re not eating properly’, and all this. And it’s very important to keep your strength up obviously. So they used to make me toast and sneak it behind the curtain.
00:38:50.01 Andy Coulson:
When you have that conversation that for the first time is basically saying, ‘go and raise the money and we might not have to take you to court but if you don’t raise the money we are going to take you to court’. And you know, of course, what the end result of that court case would be. A decision, taken out of your hands, that will mean that Charlie’s life will come to an end. Did you have any sense that the law could work in that way? Did you have any sense that the law could intervene to take that kind of decision away from a child’s parents?
00:39:30.03 Connie Yates:
So I thought our case would have a very good chance.
00:39:33.11 Andy Coulson:
So that, I mean, we’re just going from shock to shock, to deeper shock in this story for you. But when you’re told that you presumably are saying to yourself ‘well that can’t be right, that surely, surely they can’t do that’. Presumably at some point you sought advice and someone said, ‘well no, I’m afraid they can’. That’s exactly what can happen.
00:39:59.00 Connie Yates:
Yeah, I mean, they can’t remove it without your permission but the judge can overrule everybody. Anybody and everybody.
00:40:07.20 Andy Coulson:
So that, I suppose, is the moment when you feel that this control thing, that’s been a relatively slow process I suppose, is now beginning to speed up. Is becoming real, more real.
00:40:23.24 Connie Yates:
Yeah, but at the same time we were still fundraising at that point.
00:40:27.07 Andy Coulson:
00:40:28.04 Connie Yates:
It wasn’t until we were actually, when we got the money and then we had a meeting with them and I’d spoken to the air ambulance team and everything, I knew how much it would cost. I knew that they could be there the very next day. Everything was in place.
00:40:49.08 Andy Coulson:
You were in campaign mode, Connie.
00:40:52.00 Connie Yates:
Yeah, and then we had a meeting and that’s when a member of the management team said to us, ‘it’s not up to us, it’s up to a judge’. And I wasn’t told that before by Charlie’s doctor. And later down the line I did have a meeting with Charlie’s doctor and he said, ‘it wasn’t my decision’. But I don’t feel that he should have told me, ‘if you get the money we’ll drop the court case’ if it was never his decision. So you know, it was again, to have that hope and then to have that hope taken away.
00:41:24.00 Andy Coulson:
Tell me about walking into the court room, Connie.
00:41:30.06 Connie Yates:
So I’ve seen it on TV before, court rooms, I’d had no experience of being anywhere near a court room before, I’d never even dropped rubbish on the floor. So I’d never done anything wrong in my life. Never been in trouble with anything. So it was a very, very surreal experience for us. And I think the judge is up high and it’s almost like you’re looking at him like he’s a god-like figure, in a way, like he’s up in the clouds. I think that may be the way that it was designed originally for judges to be this sort of superior figure. And I just felt, the room felt very cold. I don’t know if that was actually because it was cold or if it was because of the atmosphere in there and the fear that we felt.
00:42:22.05 Connie Yates:
And I just looked at him and I looked him in the eyes and I thought he’s going to decide whether my son lives or dies. And of all those other times where I felt like we’d lost control, this was the ultimate. There was no going back from this, that’s what it felt like at the time. I didn’t agree with the evidence. It’s not that I didn’t agree, even looking at Charlie’s medical records, it didn’t match with what was being said in court to the judge. That’s what I will say at this stage. And you’re not even allowed to talk in court. You’re represented by these lawyers. You can’t say, ‘um, no excuse me, I don’t agree with that’ or ’excuse me, that’s not what happened’ it’s not like, you know when you see it on TV and they go, ‘Order’ and all this. You can’t do that as a parent, you’ve got to stay quiet. And that’s horrible.
00:43:21.22 Andy Coulson:
You’re in a terrible film that has got the most horrific consequences and you’ve got no part in it whatsoever.
00:43:29.09 Connie Yates:
Exactly, but as far as I was aware the judge had all of Charlie’s medical records and everything in front of him. But I was never actually given the evidence pack to show what the judge had in front of him. So I never knew that. I didn’t know the judge didn’t have this vital piece of research, this paper. I didn’t know that he didn’t have certain scan results and things like that in front of him. So the way the court case was run was an absolute shambles in my opinion. And because we were so out of our depth, like I said, I’ve got no legal background, I’ve got no experience with anything, I do now, obviously, but I didn’t at the time, I didn’t know what we were doing. It was completely over our heads.
00:44:14.07 Connie Yates:
So I very much felt that we have to appeal. If I’d felt that the court case had gone right and the judge had made that decision it might have been a different outcome but just the way it was run, I wasn’t happy with it. And I got in touch with another legal firm and they actually Harris Da Silva they’re called, they actually put something on Facebook saying, ‘oh I don’t agree with this judge’s decision’, and it had been flagged up to me. So I got in touch with him and instantly when I spoke to him I felt so at ease. Like, this guy knows what he’s talking about. I really felt like we had a good chance with him and he said to me, ‘we’ll do your case and we’ll do it for free and we’ll get you to America, keep your head up high, don’t lose hope, it’s not over till the fat lady sings’ is what he always used to say. He’ll be laughing listening to this now. But yeah, again, that was hope again. I can’t tell you how many times we had hope and then it was shattered again.
00:45:27.24 Andy Coulson:
We should explain that obviously what happens thereafter is a sort of never-ending series of court cases. You are, well not court cases but court process, that takes you through every court in the land essentially. In fact you’re the only case I think that’s done the full circle and then ended up back at the High Court, is that right?
00:45:53.07 Connie Yates:
As far as I’m aware that’s the only time in history it’s ever been done.
00:45:57.20 Andy Coulson:
And running, of course, alongside all this though is the public campaign. Is the debate that has now exploded publicly. What was a very moving fundraising campaign has now turned into just this visceral, ethical debate and it’s gone round the world. The Pope is giving you his support, President Trump is tweeting in a positive way for you, as I understand it, at a later stage the Vatican Children’s hospital offered to take Charlie in. It’s become a debate across the world.
00:46:39.20 Connie Yates:
00:46:41.09 Andy Coulson:
How did that feel, Connie, to suddenly find yourself in a position where your baby son’s life is at the centre of this sort of global discussion?
00:46:57.08 Connie Yates:
Mass debate, yeah.
00:46:59.17 Andy Coulson:
How did that feel?
00:47:01.21 Connie Yates:
Again, it felt horrible. Everyone had an opinion. And obviously everyone’s got a right to their own opinion but what I kept feeling is that no one knows the full story. No one knows what has actually happened. And I’m still not revealing the full story here but there’s a bit more here, I suppose, that what previously has been said.
00:47:23.15 Andy Coulson:
So Connie, you lose in the High Court just tell me what happens thereafter?
00:47:33.15 Connie Yates:
So once that hearing is over you do have the opportunity to appeal and that will be at the Court of Appeal. But what I didn’t realise at the time, and what probably a lot of people don’t realise, is that you can’t produce new evidence or it’s not like a court case would be run. You wouldn’t have witnesses stand up and things like that. So the only thing they’re asked to consider is where the judge went wrong in law. But the Supreme is different, well it can be different. So we had a bit more hope at the Supreme and we thought that we had a 70% chance of winning the case at the Supreme Court level, so there’s that hope again. And I was, I mean, that was actually filmed and you can hear my screams and I did say a few things but that’s actually been dubbed out, I won’t repeat what I said because again, I’m not focusing on what actually really, really happened.
00:48:44.13 Andy Coulson:
You broke down during that hearing?
00:48:47.12 Connie Yates:
Yeah, I don’t know if you’ve seen that yourself, I think it’s still on YouTube, but you can hear me screaming, or wailing, because I just thought, god, this is it, there’s no guarantee we could get to the ECHR after that point. I thought this could be it, it felt like it was it. And I felt in that very moment that I’d lost him. Although obviously we were still there, it was just a shock to not win it really.
00:49:21.07 Andy Coulson:
And this is now in June, I think, when you lose in the Supreme Court. And every night you’re going back to Charlie, every night you’re in the hospital. Then in fact, you get to the European Court of Human Rights, in the same month, you’re there later that month, it gets heard quite quickly, I suppose. I’m sure it didn’t feel that way for you. And again, the European judges refuse to intervene, right?
00:49:52.21 Connie Yates:
Yeah, well there was quite a few of them. And not all of them said no. And I still don’t know the ratio of it but I know that some of them agreed that he should get to try the medicine and some of them didn’t. And I remember thinking at the time that it was very unfair that there was an English judge as part of that panel. Because I thought it’d already been, we’d already exhausted all the English courts.
00:50:13.11 Andy Coulson:
After ECHR reach their decision, that they’re not going to intervene, of course the result of that is that the end of Charlie’s life is now a reality for you. That there is now going to be a process, ordered by the courts, for Charlie to be taken off ventilator. Just tell me, Connie, if you can, about that moment when you realise that that is the consequence of what you’re being told.
00:50:55.07 Connie Yates:
I mean, that again, it feels pretty indescribable how I felt. Instantly sick, instantly beside myself. Devastated, absolutely devastated that there was nothing more we could do, that was it. Like, there was nothing. It was done. It was every single court in the land had been exhausted and our baby was going to die. And yes, we’d tried, but it all still felt very unfair. And there was this guy that used to stand outside the hospital every night praying for Charlie. He used to stay up all night long, just sat on his little chair and little flask and just used to sit there praying. And I said to him, that’s it now, ECHR have said no. he’s going to… it was all arranged for Charlie to be taken to my parent’s house because that’s where he was going to pass away. And he said, ‘no, he’s not going to die, he’s not going to die tomorrow’ and I said, ‘no, he is’. He went, ‘he’s not, trust me, he’s not.’
00:52:18.09 Connie Yates:
And it was weird, that again, somehow, gave me some hope. And it sounds really, really strange but it ended up being true that he didn’t die that very next day. We were then going back to the High Court. Our legal team sent a letter to Great Ormond Street, said that this particular evidence hadn’t been considered and it would be very unfair to let Charlie die at this point. Like I said, the court case originally wasn’t run correctly so it would be unfair for this to be the final result because of that, basically. And so then we were going back to the High Court, Charlie wasn’t dying and we would actually be able to produce evidence again. Professor Hirano was there, he gave evidence. I never thought I would smile in court; I was smiling as he was giving evidence. You know he said ‘it has up to 56% chance of working’ and that was to improve his quality of life, to be a life worth living in a doctor’s eyes. And up to 10% chance of him significantly improving, as in running around, you know. So those were the odds that we were looking at. And I’d known all of this.
00:53:49.13 Andy Coulson:
You were told that that was, there was a 10% chance of that kind of recovery?
00:53:57.09 Connie Yates:
Yeah, of a really, really good improvement, yeah. And up to 56% of a meaningful improvement of it working. So that’s what we were told by the doctors. And it wasn’t just Professor Hirano, I want to add that as well, it was doctors from all over the world.
00:54:15.17 Andy Coulson:
How did the frustration manifest itself? When you’re away from the court and you’re away from the hospital, how did it show itself?
00:54:28.13 Connie Yates:
Well, we weren’t away from the hospital that long. It was literally just to sleep and that was it. And we took turns, as I said before. So we tried to stay as calm as we possibly could and if we ever did feel that we were getting angry or if I ever felt that Chris was getting slightly angry or slightly… the code word was Charlie. Because if we kicked off at all then we wouldn’t be able to see him. So that was our code word and that worked quite well for us. But most of the time the frustration was more sadness because you’re looking at your child and it’s your flesh and blood and I just think he grew in my stomach. Like, he’s our baby and we… that’s what it was, it was just tears. That was sadness that we couldn’t help him.
00:55:27.12 Andy Coulson:
But you were fighting for him in the most astonishing way.
00:55:31.07 Connie Yates:
Yeah, we did everything we could, I know.
00:55:33.07 Andy Coulson:
And as you just touched on, you were making legal history, you getting back into the high court. Professor Hirano has come over but then, as I understand it, Professor Hirano sees Charlie and there are discussions. You’ll tell me what the process was thereafter but it ended with a decision that it was too late. That even if the treatment were to happen it was now too late for Charlie. Is that the right explanation for what happened next?
00:56:14.14 Connie Yates:
The judge then asked Professor Hirano to come over. So we had a doctor from Italy, a doctor from Spain and also him coming over from New York to examine Charlie. And they said ‘yeah, he still feels pain, he still feels pleasure. He’s definitely responding, he’s still there.’ And we very much knew that he was still there. I can understand how, with his level of muscle of weakness, how that could be hard to see, especially someone who didn’t know him but we knew he was there. So that was the examination at that point it was still worth a try because obviously this medication would improve his muscle strength and he then potentially wouldn’t rely on this ventilator anymore.
00:57:03.01 Connie Yates:
So they went back to their countries and they recommended that he have a scan of his muscles to see how much damage had been done to be able to gauge the amount of improvement that we could expect. So Charlie had a full-body MRI scan and that’s when we got bad news. And that Charlie only had 10% muscle left. The way that the NHS lawyer said that in court, I will never forgive her for that because she said that he’s ‘just turned to fat’. And I just thought that that was so insensitive of her. And also we didn’t know the results of that scan. We found that out in court. Our lawyers had said to her, specifically, ‘the parents don’t know the result of this yet, can we please tell them afterwards privately’ and they went, ‘yeah, yeah, yeah that’s fine’. And then she stood up and said to the judge ‘oh, have you seen the latest scan results?’ And he said, ‘no not yet’ and she said, ‘oh may I just say it makes for very sad reading’.
00:58:17.20 Connie Yates:
That’s how we found out that his full-body MRI scan was bad news. And with 10% muscle left, you’re never going to walk, you’re never going to be able to breathe by yourself. You’re never going to be able to lift your arm above your head, all those anti-gravity movements, they’re not going to happen. And that wasn’t the life that we were fighting for for Charlie. I think by July, 2017, too much time had passed. If this had been given in January when it was first considered, it may have been a very different outcome. And that gives us some peace because we know that if it was given in July it probably wouldn’t have worked.
00:59:01.08 Andy Coulson:
So tell us, Connie, if you can, you are learning that the end of your fight for Charlie, you’re learning it in the most wretched of ways, in the way that you’ve just described, just tell us what follows after that hearing.
00:59:24.14 Connie Yates:
So we wanted nothing more than for Charlie to be able to come home. Or at least to my parents’ house. Now that’s been my family home for my whole life. I was brought home from the hospital there. So that’s very much my home, as much as my home is my home. So we really wanted that for Charlie to pass away and we’d always said that. We were always told that we could do that. That was part of the palliative care plan, if that’s what we had chosen. And then it was said that that couldn’t happen anymore. And that was, again, a shock.
01:00:03.04 Andy Coulson:
What was the explanation given for that?
01:00:06.05 Connie Yates:
Well, the explanation was that the ventilator wouldn’t fit through our door or that there were steps to manoeuvre, but we live in a ground floor flat and the portable ventilator is smaller than a Sky box, it’s tiny. And we had Charlie out for cuddles all the time. We had Charlie on the roof of Great Ormond Street Hospital, we know these things are possible. So that felt like a further sort of kick in the teeth. And I think it’s very, very sensitive, the end of a child’s life. And I know a lot of times parents don’t get that option to go home, things just happen and they’re out of control. And a lot of children do die in hospital, I’ve seen it myself many, many times, unfortunately, very traumatic. But we had that option but then that was taken away even though it was agreed.
01:00:55.21 Andy Coulson:
Because that had been agreed previously right?
01:00:57.14 Connie Yates:
Yeah, it was. And we also had the option of having just a few days away from the hospital, it was in a flat but it was set up like an ICU. And they said to us that we could do that as long as we had a doctor and as long as we had a nurse. So we sorted out a doctor and nurse and then the goal posts were moved again and it was it has to be…
01:01:29.21 Andy Coulson:
And Connie, the explanation for it was, ‘we don’t think we can get the ventilator up the steps’?
01:01:37.03 Connie Yates:
That was the explanation for coming back to our house. So then we started exploring other options. It sounds terrible doesn’t it? Because it sounds like I didn’t accept anything but it’s just because we were always told that was an option and I just always had it in my mind, we will get out of this hospital one way or the other, do you know what I mean? And I just think that was quite important to me. So we had this other option and they said ‘you can do that, it’s not your home address, it’s a secret location’. I think maybe part of it was that they were worried because of the press, I don’t know. But they never said that but maybe that was, I’m just guessing.
01:02:15.11 Andy Coulson:
But in any event, this is a family, this is a couple, yourself and Chris, who’ve been through untold trauma and stress and you were asking for you son to be with you outside of hospital to die. And you were being met with bureaucratic obstruction, let’s put it that way.
01:02:49.20 Connie Yates:
And it didn’t feel very kind at the time. And we were saying, ‘We’re letting him go, he’s going to die. Please just give us this final wish. Just let us do it outside of this hospital. Do it in a nice environment where we can spend these last precious few hours treasuring him and making it as nice as it could be.’ I mean, it’s impossible to really have a nice death but as nice as it could be, as I said. And it was ‘yes you can do that if you get this certain doctor’ and then it would be, we’d get the doctor and it’s ‘no they have to be an intensive care consultant’. And you know even on the ward you don’t have an intensive care consultant there at all times. So it was just these different goal posts all the time.
01:03:47.13 Connie Yates:
So then that wasn’t possible, I had to give up with that but the heart breaking thing is that I spent so much time trying to sort out these doctors so that I could have this extra time with him but I was like, no I need to spend it with Charlie, you know he’s still here right now, I need to spend it with him. And I was with him, I was still there lying next to him, holding his hand. But I felt that being on my phone sending emails here, there and everywhere, I felt like I wasn’t, 100% of my attention wasn’t on him. And that’s not what I wanted.
01:04:15.13 Connie Yates:
So it was then going back to the court again to decide when and where Charlie would die. It was ridiculous, absolutely ridiculous. And not what we wanted at all. And they asked for this certain date, the hospital asked for the 28th July and we asked for a few days later, just to give us that weekend, just so we could have a bit of peace. Because like I said to you, I’d spent this time trying to sort out these doctors and trying to sort out the end of his life that I just wanted just a couple of days just peace, just away from the media, away from court cases, knowing he’s going to die but we’ve got just forty-eight hours with him. Just some time, we’ll play some music, we’ll make some memories, we’ll take some photos, we’ll do some hand casts, you know all those little things that you can do to make it nicer. But yeah, so back to the court again, as I said, they asked for the 28th July, we asked for a little bit more time. But the judge agreed with them, yet again. So you know, straight away, just agreed with what they said. And almost felt like if they had said to him the sky is green, he would say, the sky is green, that’s what it felt like. It just felt like we weren’t being listened to, yeah, it was horrible, it was horrible, horrible.
01:05:35.07 Andy Coulson:
Just from the moment that you, that conversation that you described in Great Ormond Street where you’re taken into the room with tissues as you describe it, to be told your son has an awful condition that is incurable, he won’t survive, right the way through, the story that you’ve told us, and you are now in a court again just asking for, having conceded that there’s no more to be done, just asking for a bit more time, and you’re not given it.
01:06:18.17 Connie Yates:
No. And you know, all the media had to go out of the court at this time, it was secret the day that he was going to die. Which I do understand of course, and you know my mum said, ‘Can I stay in here?’ It was the first time she’d been there because she was always with Charlie when we were in court because we just didn’t… it’s not that we didn’t trust the nurses, of course we did, you know…
01:06:41.09 Andy Coulson:
But you wanted…
01:06:42.11 Connie Yates:
We just wanted a member of our family to be with him. Like, we were there all the time, as I said, and if we couldn’t be then we wanted a family member to be there with him. So it was the first time that mum had attended a court hearing and the judge just said to everyone, ‘Everyone get out of the room apart from Connie’ Chris was with Charlie, ‘…apart from Connie and the legal teams and that’s it.’ And so everyone left and my mum remained seated. And he said, ‘Everybody leave the court room.’ And she said, she stood up and she went, ‘I’m his grandmother’ and he wouldn’t even let her stay in there.
01:07:17.07 Connie Yates:
So I had to receive the news that my son was going to die on this particular day, knowing I wasn’t going to get the extra time, the extra couple of days with him, on my own. Like, Chris wasn’t there and I actually, I broke down again and I was actually… I kind of lost control at that point, I was actually hitting my own legs. And my lawyer was next to me and he was grabbing my arms to stop me doing that. I think I ended up hitting him, not purposely, but I was just sort of… it was just that anger and frustration and sadness and all the emotions rolled into one and just the… it just felt the injustice of it all you know, basically.
01:08:08.09 Andy Coulson:
Injustice is a word that gets used an awful lot in this day and age. But for me, Connie, it’s just the endless layers of crisis that you’ve had to kind of fight your way through with Chris with, it strikes me, very little, obviously you’ve had your amazing lawyers who came in to fight with you and thank god for them, but the system didn’t offer you any support really.
01:08:54.20 Connie Yates:
Yeah, we feel like we were very let down in a way. But if I could do it again now I think it would be very different. But we could only do what we had knowledge of at the time.
01:09:15.11 Andy Coulson:
July 28th, as you mentioned, Charlie dies just a week before his first birthday. I mean, how, Connie, did you keep a… I mean now you’re not just dealing with anger, obviously now you’re dealing with grief. How, again, if I can ask, did you manage to… because you talked us through this story, Connie, in the most astonishing way, your recall and your rationale and your, I hope this is the right word to use, but your reasonableness about the situation that you were finding yourself in a way, all underlined with this incredible determination that you clearly both have. In the sort of weeks and months after Charlie died, how on earth did you keep a lid on all that?
01:10:28.01 Connie Yates:
I don’t know. I still don’t know how I’m keeping a lid on all of it, to be fair. You know, I just think we were so lucky to have him for one week short of a year, some parents don’t get that. We have such precious memories of him at home and in the hospital as well. It wasn’t all bad. It’s better to have loved and lost than never loved at all, it’s true. I wouldn’t change it for the world, he was the most amazing son but with that the grief never goes, it doesn’t really get any easier when it’s a child.
01:11:17.04 Connie Yates:
And you don’t really realise that until you lose a child and it’s hard for anyone to understand that. It’s a different sort of grief. I always say that grief never dies because love never dies. It doesn’t get easier, there’s always a Charlie-shaped hole. And a lot of that was taken out of our hands but ultimately he had a disease that neither of us could do anything about and we tried our best, that’s all you can think. And I do look back and wish I’d done things differently but I just tried to be as dignified as I possibly could. And maybe I shouldn’t have but I don’t know, I just, I have to live with the decisions that I made at the time.
01:12:06.13 Andy Coulson:
I don’t think anyone listening to this would even begin to make an argument that you should have done things differently. I think what you did is though the most unbelievably difficult circumstances, against resistance at every level, is just incredible. And I ask you how you dealt with your grief, which obviously you are still dealing with, one way that you dealt with your grief is to turn it, as much as you possibly can, into something positive. And that you, with Chris, have set up the Charlie Gard Foundation with the money that was raised in Charlie’s name and that that foundation now is focused on raising awareness and fighting Mitochondrial Disease which affects far more people than I suspect most people appreciate. And then also to campaign for Charlie’s Law which is a private members’ bill designed to protect parents’ rights when a child falls gravely ill.
01:13:22.19 Connie Yates:
It’s actually parents and doctors but we’ll get into that, carry on.
01:13:26.08 Andy Coulson:
Well please, no, that’s my question. Explain to me why Charlie’s Law is so important to you. Explain to me the difference that it would have made to you had it been in place.
01:13:39.04 Connie Yates:
Well it was actually quite soon after Charlie had died. I think it’s important again, when a parent has lost a child if there’s something that could have been done differently, they want to try and prevent that happening to another family. You know, even if it’s only one life that’s saved, or one child that gets to try a treatment, just one family that has peace of not having that ‘what ifs?’ I think that was important to us. And that was good to have that focus. But it wasn’t something that we thought we should just do from the, just from the parents’ side of things. We thought we need to really do our research here; we need to speak to doctors. I made aa point of speaking to doctors who publicly opposed us, which was actually really hard to do. But we needed to find a way that we could all go forward together. So we spoke to many…
01:14:35.10 Andy Coulson:
You sought those doctors out, did you? You wanted to have those conversations?
01:14:39.11 Connie Yates:
Yeah, yeah, as hard as it was and I felt terrible at the time, you know, such high anxiety I could barely speak, my throat was so tight, my shoulders were up to my ears but anyway, that’s how I deal with stress but it’s something that we have to do. You know you have to, I think you have to do your research properly to be able to go forward and to get the support that you need to get a law changed. So yeah, we spoke to many MPs and NHS professionals and a medical ethicists, legal experts, doctors and other parents to try and come up with something so that we could try and resolve these disagreements at an earlier stage and preferably without going to court.
01:15:26.02 Connie Yates:
So what we’ve actually got at the moment is two private members’ bills. One by Bambos Charalambous whose background is law and one by Baroness Finlay, who’s a former President of the British Medical Association. So basically we want to ensure earlier and better access to mediation services and independent ethics committees. So that’s something that we didn’t have, like I said, earlier on when the Ethics Committee was cancelled and mediation was refused. We did have mediation but that wasn’t right until right at the end in July. So that wasn’t at the early stage. So we want that right at the early stage because disputes may be resolved rather than relying on the judge, you know. So also, we want access to medical data and that was something that we didn’t have early on enough. We think it’s important, especially when trust has broken down, that parents are able to get a second opinion if they want one.
01:16:29.24 Andy Coulson:
01:16:31.02 Connie Yates:
And you know, sometimes it could be the same as what the hospital is saying but it just gives parents that reassurance that yes, that’s correct and that’s what’s happened to my child, you know. So different case with us, but anyway. And also, another thing that we’ve got is building upon the best interest test. Now this is always a bit complicated to explain and we’ve had quite a lot of backlash about this from a few people as well online. But what we’re doing is not abolishing the best interest test. So basically if we believe that, or the parents believe, that a treatment is not harmful and another reputable institution is willing to provide that treatment, then we don’t think that that child should be prevented from receiving that treatment. Obviously due to Covid at the moment it’s unfortunately had to be stepped back a bit and we’re not quite sure when it could be put forward again but we’re still going to carry on. As you’ve probably realised by now I don’t give up very easily.
01:17:48.23 Andy Coulson:
That does come across Connie.
01:17:52.06 Connie Yates:
So yeah, we just want to be able to prevent what we’ve been through for anyone else. It’s hard enough having a sick child and to then go through this and to then be taken to court and it can be done in a better way, basically.
01:18:09.01 Andy Coulson:
But Connie, there are several astonishing things about your story but what’s amazing is that having gone through everything you’ve gone through, you’ve now decided to immerse yourself in pretty complex areas of law with a passion and a focus that is breath-taking. Now you have Oliver. His arrival, I assume, has made you even more passionate in the cause, even more concerned to advocate for parents’ rights.
01:18:51.08 Connie Yates:
Yeah, well, you know, I must admit I think I would be a bit scared if I had to take him to hospital. But I do know that he doesn’t have the same condition as Charlie. But there are no guarantees, I’ve seen a lot of sick children, the world is a bit more scary for me right now.
01:19:09.16 Andy Coulson:
How are you managing that, Connie, how are you?
01:19:13.16 Connie Yates:
Well, you know, things happen and somehow you cope and I’ve just got to pray that he’s going to remain healthy and lived a healthy, happy life, that’s all I can ask for. And I think you realise that, you know, money’s not important, materialistic things aren’t important. What’s important is health and happiness. And I just think when you’re going through hell you’ve just got to take it a day at a time, sometimes an hour at a time, sometimes a minute, sometimes a second and you’ll get through it because you don’t have a choice.
01:20:00.19 Connie Yates:
And little Oliver, like I said earlier, has brought so much joy to our lives and I don’t think we would appreciate him as much as we do if we hadn’t been through what we’ve been through. So he’s probably more loved than he ever would have been. Charlie was more loved than he ever would have been. Everyone’s more loved than they ever would have been in my life right now. I just think you appreciate things, you appreciate… when Charlie died I felt guilty that I could still breathe and he couldn’t and they took that ventilator away, I couldn’t watch it, I couldn’t watch it be done. But he then opened his eyes and looked at me as if to say, ‘help me’ and I couldn’t do anything. And that broke my heart and tears are coming again now. But I then felt guilty that I could breathe and he couldn’t and… sorry…
01:20:59.06 Andy Coulson:
Connie, I think all I can say, on my own behalf but also on behalf of anyone whose listening to this, is there is no doubt at all that you could have done any more for Charlie and how lucky he was to have you as his mother. And I think the second thing that people would want to say to you, if they had the chance, would be congratulations. Congratulations on Oliver, we could not be happier for you and Chris. And then I’d just like to say thank you for sharing your story with us today.
01:21:41.23 Connie Yates:
Thank you, there’s a lot more to it, believe it or not.
01:21:45.10 Andy Coulson:
I’m sure, have no doubt.
01:21:47.08 Connie Yates:
Barely even talked about Trump yet.
01:21:50.17 Andy Coulson:
Yeah, is he going to win the election, I suppose?
01:21:55.07 Connie Yates:
You know what, I’ll always appreciate what he did for us though. No one’s perfect but he was good for us. I don’t think, without his help, we would have got any peace in this so thanks Mr Trump in that.
01:22:13.24 Andy Coulson:
Connie, thank you so much, thank you so much for your time. Thank you so much for feeling you could share your story with us.
01:22:23.14 Connie Yates:
01:22:23.24 Andy Coulson:
Thanks for listening to Crisis What Crisis? Do feel free to send us your feedback. You’ll find our contact details and our show notes giving you the key insights from our guests at crisiswhatcrisis.com. There are more useful conversations on the way so please do subscribe and if you like what you hear give us a rating a review, it really helps. Thanks again.
01:22:47.01 End of transcription