Sepsis In Children - Gemma and Helen's Stories

Abi Dawson

Hi, I'm Abi. And I'd like to extend a very warm welcome to these Sepsis Research FEAT, Words Of Sepsis podcasts. Over the course of eight episodes, we'll be talking to sepsis survivors and their families about their experiences of sepsis. Some of the stories you hear may be quite painful, many are uplifting. They are stories of shock, fear, sometimes loss, often courage, but also of hope.

Sepsis is a condition that still takes the lives of some 50,000 people in the UK every year. That's about five lives lost every hour. Our hope is that through these podcasts, many more people will become aware of sepsis and that some of the loss and suffering related to sepsis can be prevented as you increase your knowledge and the knowledge of others.

So do please listen, share these words of sepsis and help to raise awareness and save lives.

In this episode, you'll be hearing from Gemma and Helen, whose children both developed sepsis seemingly out of the blue, but with terrifying consequences. Gemma's son William was three when he developed sepsis. He had been at nursery all week and she noticed he was tired when she picked him up, but she didn't think too much of it at the time.

Gemma

I took him to the play centre to meet my sister with her little boy and we're at the play centre and he didn't eat his tea and for him not to eat his tea was quite unusual and I thought, I hope he's not got a bug. My husband Mike was working away in Scotland for the weekend and then we were in the car on the way home and he was sick, so I thought he's picked a tummy book up from nursery. Again, not overly concerned. And over the weekend he developed a temperature, just really off in himself, quite lethargic. On Saturday I got quite concerned, I just couldn't bring his temperature down, rang 111, spoke to them and in true typical kids fashion, by the time the doctor from 111 rang me back, he was running around, happy as Larry, great, he's fine. I had a good chat with the doctor, keep an eye on him. And then Saturday night he went back downhill again, really high temperature. There was nothing that I could particularly put my finger on that I would say was concerning me on its own. But as a whole, I've just not seen William that poorly. I was thinking, am I thinking it's worse because my husband's away and I'd also got my little girl, who was one. When you've got a three year old and a one year old, you're in a constant state of exhaustion, so everything always seems worse in your head. Sunday night, Mike got home from Scotland and William seems to have picked up a little bit, so I think, great, we're over the worst. Sunday night, he went back downhill again. Again high temperature, he developed a rash through the night, not eating, not drinking, just really not himself. From this really whirllwind of a three year old to just wanting to lie on the sofa, not really wanting to eat, a bit of a cough, bit snotty, everything that you could put down to a typical nursery bug. With the rash and his temperature, still struggling to keep that under control, I took him to the GP on Monday morning. GP examined him, thought he'd got a virus. Keep doing what you're doing, keep up with the Calpol, it should be better in a day or two. I came home from the GP and I said to my husband, I'm just not happy. I don't know if we've been very fortunate that I've never experienced the child this poorly and again, I can't put my finger on one particular thing, I've just never seen William this poorly. All day Monday, I thought he'd got sore throat. So we're trying to get ice pops in him again, trying to get some fluid in him and he was on the sofa and he asked to go to bed. And three year olds don't ask to go to bed. We went upstairs and laid on the bed with him. He had been so unsettled all day, got a high temperature, got a bit of a cough. He was exhausted, and he just couldn't sleep. He had finally gone to sleep about 9 o'clock at night. Mike saw an article on Facebook and it said that Scarlett Fever was doing the rounds again. And so I went on the NHS website, I had a look at Scarlet Fever and I said, that kind of ties in, like the rash, the sore throat, the temperature. And we had the conversation of he's just gone to sleep, he's exhausted, maybe we'll just be best to let him get some sleep tonight and he'll start to feel better tomorrow. Something just made me say, you know, what? If it is scarlet fever and he needs some kind of antibiotics, then if I take him tonight, that's 12 hours sooner he's going to start to feel better and my husband agreed. We rang 111 again and explained, and they said, take him into your local A&E and see the out of hours doctor. Still at that point, didn't have any idea that he was seriously poorly. My niece had scarlet fever a couple of months before and a few days feeling unwell and she bounced back fine. Georgia was fast asleep in bed, our little girl and I said to Mike you stop at home, I'll go and get some antibiotics. We'll be home in an hour or two. As always happens when these things happen, my car was in the garage, so I had to take Mike's car and we got to A&E and waited for the lady to see him and I remember him sat on my knee in A&E and I just wanted to cuddle him because you just want to cuddle your babies when the poorly and he just wanted to be left alone, which was just not uncharacteristically like William. She shouted us through and she started listening to his chest and she said, I'm just going to ring for a paediatrician to see him. You think, all right, well, this is not a children's hospital per se, so don't panic. You start to get that feeling that something's not quite right. And then she said, we're going to take him around to resus. And I said, resus? Yeah. There's not a bed free on the ward. Right, okay. At this point, he was drinking, he got a little sippy cup and we couldn't fill it fast enough. He was drinking so much water, again I didn't know at the time what that meant. We went around onto resus and it was all still quite relaxed and the nurses were quite chatty and then a female doctor came over and she was examining him and she kept pressing this rash, pressing this rash. And she just said, do you understand what's happening? And I said, no. I said, has he got meningitis? And she said no, he's got sepsis. Because obviously a rash, we all know about the rash and the glass test the meningitis. She said he's got sepsis and I said, sepsis? What's that? She then started to explain he's quite poorly and I said, do I need to get my husband in? She said yeah, now. And from that minute the room filled up and the whole atmosphere changed and everything got very scary, very, very quickly. Obviously, Mike was stuck at home with our little girl and no car. I rang my mum in an absolute state, she shot through. Our sister in law came over to our house and Mike's parents, so that Mike could come to the hospital. It was all a bit of a blur, really. The next thing I know, they were thinking that he just got scarlet fever and we were just there to get some tablets to saying he is critically poorly and we're giving him lots of fluids and antibiotics, but we think we're going to have to put him into an induced coma to give his body a rest. And your head can't catch up. You can't comprehend how he was sat there awake at this point and he was so brave. They had to try and get cannulas into his feet and Mike arrived and my mum arrived and the decision was made that, yeah, we do need to put into an induced coma and he needs to be transferred to paediatric intensive care, which they don't have at our local hospital. They were making some phone calls, he said, there's a chance that he will have to be airlifted to I think it was Sheffield or Birmingham, but if we can, we'll get him in Queens Medical at Nottingham, which is obviously the closest one to us. You just can't comprehend how we ended up here and they put him to sleep and we had to go off to the waiting room and they worked on him all night, to stabilise him, and a specialist transport team had to come in from Notts. Fortunately PICU at Queens have got a bed for him and they said, look, you can come and just give him a kiss before we set off to Queens. By this time, it was probably six o'clock in the morning. We went back through and he was unrecognisable from that little boy that I bought in only hours before. He was pumped with that much fluid, he was just obviously intubated and I think at that point, it kind of hits you that this is really serious. And they said, look, all the time it's taken us to get him onto this transport machinery, when we get to Nottingham, it's all got to be put back onto the hospital machinery. So if you want to go home, if you want to go and get a coffee, you'll not be able to see him straight away. I just said to Mike just get me to the hospital, I just need to be near him, just get me to the hospital. So we drove straight across to Queens Medical and it was rush hour traffic and I remember seeing, we were on the dual carriageway and there's a chap next to me, obviously really frustrated that he was on his way to work and stuck in this traffic and I was just thinking I would do anything for that to be my bad day today. We got to Queens and it's not a hospital I was familiar with at that point. Second home now, but I've never been before. I think we were wandering around the car park, looking like a deer in the headlight, and some nurse came and said, can I help you? I said, we're trying to find PICU and she said, I work there, come on, I'll take you up. We got up there and they showed us to the family room to sit and wait and there were two ambulance guys that I recognised from King's Mill. I said, you bought my little boy in, you bought my little boy in, how is he? And they said, we just drove the ambulance, the doctors are in the back, but we didn't have to stop and that's always a good sign. We were just chatting to those ambulance drivers and a consultant came through and he said, I'm so sorry, but William's heart stopped. We don't know if we're going to be able to get it going again, so you need to come and be with him and I think that's just like our world collapsed, you can't comprehend what you've been told and I think Mike had to physically pick me up off the floor and thankfully, by the time they'd got us down the corridor to where he was being treated, they said, it is going again, his heart is going again. There must have been 30 people around him, working on him. It was like something off telly, like you see on Casualty. I was just shouting, please don't let him die, don't let my little boy die, please don't let him die. And Mike dragged me away and said, you're distracting them, they need to do the job, you're distracting them. So we went off and it was a kind of they came and explained to us at the minute we're working literally minute by minute, he is extremely poorly. They said, if his heart stops again, we don't think he's going to be strong enough to pull through. They were talking about getting an ECMO machine, which is a heart and lung bypass brought in from another hospital and we thought we were waiting for that all day. That's like the biggest form of life support, really, so that his body could rest. Then we were told that it was coming and then it wasn't coming, It was coming. We were later told that actually those machines are so precious and so few that they have to have a case by case meeting to decide where to release them. The team from the, I think, it might have been Birmingham Hospital, where it was meant to be coming from, deemed William too poorly to warrant taking that machine across to Nottingham. They said that if they put him on it, it would never come off. But thankfully for us, he didn't need that machine.

Abi Dawson

William was in a coma for seven days and it was within the first couple of days that Gemma and her husband were told about the damage Sepsis had done to their son.

Gemma

His hands, his feet, his nose and his ears were all starting to go purple and black. It was a plastic surgeon who came and sat us down in the little room where you get bad news and said, he is going to suffer some degree of limb loss. I said, s he going to live? And they said, I can't promise you that, we're doing everything we can. And I said, well, come and talk to me about what he's going to lose when we know he's going to live, because that's all I care about right now. So it was day seven when they extubated him and that was quite difficult because all the children that had come in to PICU had been intubated and extubated probably within a period of 24 hours and within an hour were sat up eating ice cream and chatting to their mum and dad. I was so excited to hear his voice again and to see his smile and felt like we'd waited forever. And obviously once they started to bring him around, that didn't happen. He was very sleepy he'd been intubated for a long time and it was days and days before he even spoke. they decided to do a brain scan which revealed they'd got some brain injury and then they weren't sure if he was going to speak again and I think we were waiting for this almighty high and it was just a further week of bad news. He'd got a blood clot, his lung kept collapsing, he had to keep having chest drains in, but he pulled through against all odds, really. I think I remember the doctor saying, we're doing literally everything we can. We're even giving him vitamins because it won't hurt. Anything that might just give him that edge to help him to fight. And he did. He fought so hard, bless him, and thankfully he pulled through and it was then kind of a case of waiting to see what damage the sepsis had left and what damage the drugs that they used to treat it had done. It felt like a long wait at the time. I think now we're grateful for that because William has been very fortunate.

Abi Dawson

And it's been a long journey of recovery.

Gemma

That was the end of January and he didn't have his amputations until the beginning of March, but they waited for his body to really make clear what was going to survive and what wasn't. And when he first came around they thought he was going to lose both his ears because his ears had gone purple and by giving them time, both his ears are fully recovered and I'm so grateful they didn't rush in and chop any bits off that didn't need to be chopped off. But, yeah, beginning of March, he had surgery to amputate both his legs and parts of nine fingers. That was the 2nd of March and I think that was really the start of his recovery because there was just no stopping him after that. We came home on leave on I think it was the 11th, thinking we'd have to go back to be admitted on the 12th, and we went back on the 12th and they actually formally discharged us. It was my 30th birthday on the 13th March, so it was like the best birthday present in the world. Within weeks, he has being fitted for his prosthetic legs and he's just gone from strength to strength, hes absolutely amazed us all. He's just blown us away. Hes so happy and so positive and there's no stopping him, really. He's like a popular little boy in his school. He's got all the little girls like to mother hen him, so he's always got a little like harem of girls around him. He just gets on with it. Unfortunately, we've just recently found out that the sepsis actually caused some damage to the growth plate in his left leg, so that's got to actually be amputated a little bit higher. So he'll be like a bilateral through knee amputee. So he is wearing his legs a bit less than normal. But I mean to him that's just a great excuse to fly around on his skateboard in the playground, school have got him a skateboard and he whizzes around and you have to watch your ankles with him and he just loves life. Like I remember coming in from hospital and we got a big trampoline in the garden and just thinking, ouch, thinking that we were going to have this little boy that wouldn't do all the things that a normal six year old boy should be doing and I don't know what I thought he would do but it was so hard to imagine and everything that we worried about that he would or wouldn't do. Everything that we had concerns about. He's just proved us wrong. And now he flies out the patio doors, across the garden, on all fours at an absolute rate of knots, climbs up the steps, throws himself onto the trampoline and just bounces around like an absolute nutter. There's not much that he can't do and he's fiercely independent, he does so much for himself, there's always a way, don't ever tell him you can't do that, because there is always a way and if there's a way, William will find it.

Abi Dawson

Helen's son Toby was ten when he contracted sepsis. Helen says, at first it seemed to be a typical bout of flu.

Helen

He went to school, a normal little boy going off to school. He came home with a bit of a cold, bit of a sore throat. After a couple of days, it hadn't got much better, so we took him to our GP just to be on the safe side, and she said give him some Calpol, give him some Nurofen as well, if you want to mix it up and you'll be fine. So we did that and he did pick up a bit. He went back to school on the Thursday and he even played in a hockey tournament on the Friday, but at the hockey tournament it was quite cold, it was a bit miserable. He wasn't his usual self, he didn't take part as much as he would normally, he sat out quite a bit and he was just out of sorts, but nothing more than you think of a nasty cold. He came home, was very lethargic, fell asleep on the sofa, which is totally unlike him because he's a very active little boy. I was going out that evening for a friend's birthday and my husband said, o, he's absolutely fine, I'll just put him to bed early and give him a hot water bottle or what have you. Before he went to bed, he was sick, so my husband called me, he said, Toby wants you to come home and that in itself was a bit unusual because he wasn't particularly needy little boy for me. And I thought, that is really odd, so I was straight home. He was poorly, he was in bed by that time he'd been sick again and he had really bad diarrhoea, he was quite hot, he had a temperature, but nothing that made me think, this is really bad, he was just poorly. That night he slept in our bed because I thought I don't want to be up all night and he needed to be close so I could check that he could get to the bathroom. But during the night his diarrhoea got really bad and he was really, really thirsty and he became quite delirious, I think. I don't know if that's the right word or not, but he was saying just very odd things. Like "I'm on an obstacle course, I didn't win, get me off" and all this stuff. And I just thought, Toby you're dreaming. But I'd never seen him like this. He wasn't sick again, but again the diarrhoea was really bad and his temperature was high. So I put cool flannels on him and then it didn't get any better with Calpol and ibuprofen. So I watched him, I just thought he just seems a little bit listless and the temperature was worrying me. Now this was a Saturday, so our GP is shut and there's something I just thought I think I'm going to call 111 just to get some advice on how to bring the temperature down or whatever we needed to do. I called 111 and I have to say they were utterly fantastic. They talked me through it and within 10 minutes the doctor called me back and he talked me through everything and he said I think you should call an ambulance, just to get the hospital to check him out because the GP's shut. So I called the ambulance and this probably about 10 o'clock. One thing in hindsight, the ambulance took 2 hours to come. I wish I'd just put him in the car and taken him into hospital, but I didn't. The ambulance came and they came up to the bedroom and they started looking at him and they checked his skin and they said it's blotchy. And, sepsis I heard it said for the first time. Now, I didn't know anything about sepsis at all. My husband did because his father had unfortunately had that not too long before when he was unwell. So red flags started to go and then they checked him over, they put him into the ambulance and he was blue lighted to our local hospital, which was the Luton and Dunstable Hospital. He was rushed straight through to a cubicle where a nurse immediately saw him. Now again, hindsight, if I had taken him, we'd probably have sat in a waiting room for a couple of hours anyway. So the fact was he was seen very, very quickly and the nurse, and I remember her name, Helen, I think she possibly saved his life because she started to pump him with antibiotics and fluid. Then the children's doctor, the Paediatrician came down to look at Toby and he said I think he's got scarlet fever and he's also got flu. And combined this is all totally overreacting with his body so we'll take him upstairs to the ward and we'll put him in a side room and we'll monitor him, he needs antibiotics intravenously. So we went upstairs to a side room in the children's ward and Toby, just the diarrhoea was getting worse, he kept saying, I'm so thirsty, I'm so thirsty. So they were giving him water on a little sponge and then he was linked up to some machines and forgive me, I don't know what they're all called, but these machines I've seen on ER and the various hospital programmes where they monitor your heart rate and bloods, and then everyone started rushing around a bit more and saying, right, I think we're going to, his blood pressure is really decreasing and we don't like the look of this. We're going to intubate him to help him breathe . At this point I thought, this is all just completely spiraling out of control and there are lots of lots of activities. I was asked to leave the room and that was that. And I called my husband, he was with my other son, taking him to a school entrance exam. I said, this isn't looking very good. It's gone from when we were at hospital to he's now got a tube to help breathe. And they kept going into his room with bags and bags of saline and they were pumping him with lots of water. Then sporadically, a nurse would come out and just say, it's okay, do you want to go to the parent and family room? And I just sat outside and thought, no, I just want to be completely close to him, but through this door. And then my husband arrived, which was good, because we could just start supporting each other and the doctor that originally saw us said, can you come to my office? I need to have a chat with you. He said, your son is very, very ill. He's got what I think is a form of toxic shock syndrome, where his body is fighting against itself. So he had a throat infection, he had the flu, and together they built up something which the body was fighting against. So it was a pretty dire situation. I believe now that is what sepsis is, something fighting the body but he was very blunt. He said there's a 60% chance of survival. So that's when we started to realise this was very serious. They also said that they didn't have a children's paediatric intensive care unit at that hospital, so they would have to get him to a London hospital or Stoke Mandeville for specialist treatment. That's when they said they phoned around and time started to go quite slow and we didn't really know what was going on. It's just I remember that corridor, we were just standing in it, just waiting and not knowing. And I really can't forgive myself for not remembering either the lady's name or the services, but I think they were called Ambulance Angels. She was dressed in a burgundy outfit, which is very different from the blue of the general nursing staff and doctors at the hospital. She said, I am here to safely transport your son by ambulance to St Mary's in London and I will ensure that he gets there safely. He was on life support machines by this time and she had to transport all those onto another one in an ambulance. It took about 2 hours to stabilise him and to make sure that he was able to go in the ambulance. I just keep coming back to this, I couldn't believe that this had happened in 12 hours from him being a little bit poorly, nothing unusual, with a ten year old having an upset tummy and a bit of a temperature and a cold to this. I kept saying, how have we got to this point? So I went with him in the ambulance and the angel doctor sat there the whole time and monitored him and did everything. She was utterly amazing and reassuring in a way that we will get him to hospital. So we got to St Mary's on the motorway, it was pouring with rain, it was just a dismal February evening. My little boy lying there on life support machines. We got to St Mary's and he was taken up to the children's ward. I say ward, it was a centre, he had a big room to himself and the amazing staff there just took over. I've never seen anything like it. We were allowed to stay with him the whole time, but the nursing staff were just wonderful. They did take me away to go and have a rest in another room, but my husband never left Toby's side. But the doctor there did say, your son is very, very ill and it's touch and go tonight.

Abi Dawson

Helen says, it was hard not to think about the worst case scenario at this point.

Helen

So it was an absolutely horrific experience. And of course, we had to call our family to help look after our other son. It's not just about the situation, it's about letting people know, sorting out home life and what's going on. I'm thinking, tomorrow I might not have my son here, all those thoughts go through your head. It's always that you think the worst and what was life going to be like? And how could it be? And what did I do wrong? How have we got to this point? So then there's a sort of acceptance where we are at this point, we're in the best place and the support there was just amazing. From liaison ladies that were not medically trained, but just were able to help with all sorts of issues about finding us somewhere to stay, making sure we had something to eat, all that sort of thing. Totally amazing. And then the staff just took over Toby completely, and there were two people monitoring him 24 hours a day and they spoke about sepsis and they said that you don't want to be chasing it. You've got to get ahead of sepsis because if you're chasing it, you might lose. It was all about we have to get ahead. They took bloods and this computer just would print off these readings every couple of hours and they'd look at them, then they'd look at it and they'd rush around a bit. I'd say another 24 hours it was like that, totally just not knowing and monitoring, but a sense of relief that he couldn't have been in a better place. And then after that 24, 48 hours, I can't really remember, but it lifted a bit, in the room, they got ahead of it. The antibiotics started to work and he had a feeding tube and he started to take on the liquid food and from then I think we just breathed a sigh of relief because it was getting better. But we were told, we don't know if this has done any long term damage to his liver, kidneys, brain, we don't know with this situation. So it was still a horrible place to be. But after a couple of days it did pick up. He turned the corner and I would say the rest is history. But there was a long process after that to make sure that he was fully recovered. But he recovered in terms of sepsis really well, really quickly.

Abi Dawson

Toby is now a fit, healthy and very active 15 year old. Helen is pleased the experience hasn't left any long term issues for him.

Helen

He remembers very little, even about the night he stayed in my bed and that bit, the memories are just not there, which is good. But I'd say it has had an impact on him and it certainly had an impact on us because if he ever had a sore throat again, we are sort of, ohhhh and he was a bit cautious about certain things, although that's gone. But that will always be with us if either of our children have got a sore throat or they have an upset tum, you're just more conscious because, could it lead to anything worse? But you just have to think, I think everyone, I just urge everyone to be more aware of what can happen in 12 hours and just be like, you have to chase sepsis, be ahead of the game yourself a bit with it, so just don't let it get to that point.

Abi Dawson

Sepsis came out of nowhere for Gemma and Helen and their children. Both of them are clear about conveying the importance of trusting your instincts as a parent.

We really hope that listening to this Words Of Sepsis podcast has helped increase your awareness of sepsis. Do check out all eight episodes in the series and share them as widely as you can using them to start conversations with friends and family about sepsis. It could save a life, possibly even your own.

If you've been affected by anything you've heard, or you'd like more information about the groundbreaking research into sepsis that the charity funds please do visit our website. www.sepsisresearch.org.uk, where you can also make a donation.

You'll be helping us to save lives today and fund research for tomorrow.

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