Parent Stories

“What I found was, after this happened, you talk to neighbours, you talk to people, people at the school gates, loads of people, and nearly everybody has a burns story.”

Sometimes, people who have experienced a burn share their stories in blogs or vlogs, on social media, websites, and in articles. Reading about other people’s journeys can be helpful to those who are recovering from a burn injury, but it is sometimes hard for family members to find others who have shared an experience similar to their own – particularly the experience of a parent supporting a child through the process.

Throughout this website, short quotes have been included from parents who have been in this situation themselves. On this page, you will find written accounts of parents’ experiences, as well as a video of a mother talking about hers. These are honest and emotional accounts and you might find that they are hard to read or hear because of that. If you find these accounts too upsetting, please leave the website and distract yourself until you feel better.

Click on the tiles below to expand each story.

My daughter was living with her partner’s grandparents for a while and, unfortunately, they put a cup of tea down while my daughter was making up a bottle for a feed. They were all on their mobile phones and she went for it. You’ve got to watch it; I think it could have been avoided with hindsight, but that’s what happens doesn’t it with young children.

She was quite badly burned on the chest bone just below the chin, on the central area. She was treated as an in-patient for two weeks with dressings.

My first reaction was feeling upset really, because she was bandaged up to her head and her neck and everything. It was upsetting. I think all of us were very upset, but I probably wasn’t visibly upset, it was internal. I think older men like me internalise our emotions, that was our generation, but it was upsetting. I’m also a bit angry really that there were three adults in a room and none of them were watching her. It’s hard not to be honest. I felt angry about that but I didn’t say anything. Other people cried when they saw it because she’s such a small, nice, cute kid.

I think it was also difficult because she was woken up every hour when she was in hospital and my daughter was exhausted and desperate to get out in the end. We just wanted to get her home and out of that room.

Now she has a cream that she rubs in three times a day – special cream - and they measured her for a vest that she wears to keep it compressed on her chest. She’s quite badly scarred. We’ve had real problems with the vest because they continually don’t fit because she’s growing all the time. It’s not a short drive to the hospital, it’s 35 miles each way. So, the vest arrives, it doesn’t fit, it rubs her, and then we need to go back. You go back for a refit and it still doesn’t fit right. Then you see a specialist consultant and they say, “Why isn’t the vest being worn?” – There are lots of little frustrations. We’re relying mainly on creams now to be honest.

I think what’s most difficult after the burn is that you’ve got this child that’s perfect and happy and then you worry about how she’ll deal with comments when they start coming when she’s older. You worry about whether it’ll clear up and she’ll get her skin back to normal. It’s like a protective instinct really. You think, “I hope it clears up and I hope it doesn’t lead her to hide away a bit.” And sadness that a perfect little girl’s different all of a sudden, and it might take a lot of years before it’s put right, if it does.

I also feel concern for my daughter because she felt a bit guilty. I think she was annoyed with her partner and his parents. I think she felt a bit angry towards them and I felt worried for her. For me personally, worrying about my daughter is the hardest part. I think my daughter also gets upset sometimes when people make comments – you know saying, “It’s a shame.” I think she just wants the girl to not to have to worry about the future. I think she’s worried about what will come with comments from her peers. I think that makes my daughter a bit anxious, a bit protective, and I think she’s quite soft with her. I don’t know if it’s compensating but she does her best to make her happy; her happiness means everything to her and she tries to compensate for what’s happened.

Since the burn, we just like try to treat her as though she’s just a normal, healthy, young kid. We fuss her anyway but she’s a lovely kid, she’s a very, very happy child. We take her out loads, she’s very outdoor, she runs free, she’s got lots of spirit, and she mixes really well. We just carry on as though nothing’s really happened but I think the frustrating thing is the amount of time involved in taking her to the Burns Unit, and there’s an expense. That’s been difficult and people have took it in turns to take her. I think, because I’m retired, I take the bulk of it.

I think myself and my wife are bothered by the scars a little in that we’re always aware of it. We just wish it hadn’t happened. It doesn’t affect how we are with her, I don’t think, drastically or anything but you’re always aware of it because, when she wears a t-shirt, you can see it. It’s quite high up above the chest bone. But we realise it could have been a lot more visible really so we count our blessings in some ways.

Obviously, she’s unaware at the moment that there will be a time when she goes to school that something might be said. It’s all that kind of thing that you worry about a bit. We were in Spain recently and somebody noticed it and said to me, “Has she damaged … has she burnt herself?” I said, “Yeah” and we just talked it about it and it wasn’t a problem at all. But, it makes you think that when that first comment comes, how will she react to it or deal with it. My daughter’s a bit frightened because the kid is a bit of a free spirit and she doesn’t want her to lose that.

It’s been useful to talk too. I think you go into yourself a bit, and just deal with it and get on with it… you’re just functioning, trying to get on with everything else you have going on in life. You kind of treat it like it’s not really happened. I’m not saying that you’re in denial, but this has made me think a bit about the feelings we have pushed aside. My daughter does talk to me occasionally about it but I intend to speak to the staff at the hospital a bit more too.

When I first saw the injury, I felt panic, and shock. I recognised the severity of the injury but I wasn’t initially aware that it was life threatening - that came a little bit later. I was just focussed on trying to keep everything under control and my daughter cooled.

I arrived on the scene to find my daughter in the bath with my husband spraying water on her. He was trying to call the ambulance but his hands were also very badly burned so he was struggling to use the phone. The house stank of petrol and there were flakes of ash around.

I kept worrying about how the ambulance would find me. I don’t have a number on my gate, so I was panicking about it missing the house. I was also worried about over-cooling her. On the emergency call, the operator kept telling me to keep her cool but as I had previously had first aid training, I was also aware of how quickly children go into hypothermia.

The ambulance seemed to take forever. When it finally arrived, I could tell the crew were also daunted by the scale of the accident. Indeed, it was the look on the paramedic’s face when I asked if she were going to be OK, that was my first realisation that her injuries were life threatening.

It was a severe burn caused by petrol on a bonfire: 50% and full thickness. It burnt her face, her arms, hands; it’s very bad on the tummy and round the back of her torso and her legs – mainly the back of her legs but some on the front. The areas that were spared were protected by a little shrug cardigan and her nappy.

She was in intensive care for five weeks - she had multiple infections, multiple organ failure, a collapsed lung… she had the works. She was very ill and on a number of occasions, I was told that she may not survive. It was a very dark period. I had two other children back home, nearly two hours drive away. My husband was also in hospital and I had to rely on friends and family to look after the boys. My mum was fantastic but I needed her with me. I was told to expect my daughter to be in hospital for 2-3 months if she survived. She did well and she was in hospital for a total of six weeks.

It was a rollercoaster during her stay. The nurses always told me that she was going to get better, then she was going to get iller again, and then she was going to get better. That is exactly what happened.

The hospital is quite a contained environment. I’d been there pretty much constantly for that time. I’d come home a couple of times to visit my boys but I’d spent the best part of six weeks in the intensive care room with my daughter. It was like I was in a kind of cocoon - in this bubble of a hospital and cut off from the outside world.

The transition from intensive care to the burns unit – total hands-on care to rehabilitation – was also challenging. It felt like so much was suddenly expected of me and it was just me that was going to have to deal with it all because my husband was also injured. It was hard to get people to see that. I was always pushing for things; I felt that I was fighting the whole way.

What they didn’t prepare me for was that first year following her discharge. It was exceptionally hard, particularly the first two to three months coming out of hospital. When she came home she was still quite a poorly girl so I was having to do all her dressing changes, the pressure garments, the massage, the therapy, her medication, her itching, and her injections. I would have liked another parent to say, “It gets better, it’s fine. Yes, the scars do heal. Yes, they are there forever, but there is light at the end of the tunnel.”

Obviously I was absolutely delighted to get out of hospital, but then suddenly you’re back in your home and you’re having to deal with all of this at once and it’s just such a shell-shock - you’re taking on a job that they were doing as a team. She was also back and forward to the hospital two to three times a week and quite often I would turn up there and they’d decide they wanted to put her into theatre that day. It was a full-time job in terms of caring for her. I was having to do this on top of looking after my injured husband (he couldn’t use his hands) and my boys.

For my daughter, the itching was the biggest problem. Trying to manage her itching and keep her hands off her was a challenge. If there was ever a gap in her pressure garments she would rip her skin off because she was itching so much. The lack of sleep was also hard. She couldn’t sleep because of the itching so she would spend the night crawling round my bed crying. In fact, she would only settle if she was pretty much lying on top of me. During that period, I was also extremely sleep deprived and having to manage her injuries, my husband’s injuries, plus our other children’s needs. I was exhausted.

I remember at the hospital they said frequently to me, “Save your strength. When you get home you’re going to need it. This gets far worse when you’re home.” And, of course, when you’re in an intensive care unit you can’t imagine anything being worse but they were right. The absolute hands-on care of a child coming out of a severe burns injury was just immense. At that time, I would have liked to have met someone a little bit ahead of me, someone that had been where I’d been and could explain to me the future. The burns unit could say that it gets harder when you get home, but I didn’t really have any idea of what I was up against and there was no way really to be able to talk to anyone about it all. I would have liked advice and support. I would have liked someone to talk to me about the reality of what was going to happen from a parent’s point of view and also be able to say, “Look, this is my daughter now – it’s all fine, it’s all going to be fine but you have got absolute hell to get through first.”

In the first week, I was bombarded with phone calls from occupational health, physiotherapy, my GP, all offering their support. But you’re so, so confused and in and out of hospital. I’m a strong, confident, capable woman but actually trying to guide my way through what services were available to me in terms of financial and practical support and also her medical needs, it was very hard to actually marry those up. That support gradually fades away.

I was trying very hard to get support in place just to help me around the house, help me around the garden, just be able to actually manage my life, but that was hard to find. I struggled to get visibility of what services might be available to me. I hit a brick wall with each of them as I tried to approach them. I needed both financial help and practical support. The only financial support that I was able to access was Disability Living Allowance and I felt that the hospital could have given me more guidance in terms of whom I might be able to contact for support. They gave me psychological support but I also needed the practical support.

Since the accident, everything has changed. It has had a huge impact on the whole family. The whole family unit has changed and we’ve had interactions with services that I wouldn’t normally expect to have. It would have taken a very strong marriage to get through what we went through, ours wasn’t strong enough and we have since amicably divorced.

I work full-time and I’m now a single mum. The distance from the hospital made it very hard to balance working full-time, her hospital needs, looking after the family, alongside concern about her psychological welfare… that has been immense. I am constantly juggling.

I can only look back now and realise how significantly I was affected. I can recognise now that I would have received a diagnosis of Post Traumatic Stress Disorder (PTSD). I was not in a good place but I’m quite a strong person, so I just completely put it aside and got on with it. There was no “What about me?” within my mental framework at all. It was all about, “Right, what do I do to keep going here? What do I do?” And so I think that it meant that at no point was I actually addressing the fact that this had a huge, huge, effect on me. Perhaps there could have been a little bit more of, “Look, you really need to make sure you’re supported here as well.”

In terms of psychological support, the problem was getting local care. The psychologists at the burns unit have been very good but practically, it’s difficult to access. I take part in the children’s burns clubs event and all my children love it. Though most of the burned children we meet don’t have the same extent of injury as my daughter. She looks at the other children and she can’t see their burns injuries or they look quite small to her. When we went to the Burns Camp it was the first time she met another child who had a similar level of injury as her. It was quite sweet watching them together because they were comparing their injuries, they were examining each other’s bodies, and they were clearly fascinated by each other. It was the first time my daughter had seen someone that looked like her. This girl didn’t have facial injuries but they were comparing their legs, comparing their arms and I think for the first time it was a little bit of, “Oh, that’s how I look!” For me, I felt I actually had a lot more in common with that mum because we had both experienced what it’s like to have your child in intensive care.

My daughter’s scars don’t bother me at all. They don’t bother her either. It’s just who she is. She’s an incredibly strong, brave girl who defines resilience. I worry about the years ahead as she already attracts comments and a lot of attention. She’s got to go through the self-awareness phase and become a teenager.

When it comes to her scars, I do everything I can to try and reduce them. Some of the surgery she has is purely cosmetic. For example, I had to make a very difficult decision when she had a skin expander put in her neck because one side of her face was very badly scarred. They put the skin expander in to grow for two months over the summer. That was a very difficult decision as a parent to have to make because you’re doing something that’s very invasive purely because of cosmetic need. There was a lot of discussion with the hospital at the time – do we do this now while she’s not going to be phased by the disfigurement of having a big lump in her neck or do we wait until she’s a teenager and old enough to make that decision for herself? By which stage she will probably be more scared of operations and more paranoid about the temporary disfigurement.

I never make any effort to cover up her scars either. Her legs are very, very badly scarred but I never encourage her to wear tights, I never put leggings on her unless she wants to wear them - she has completely free choice on what she wears. But my husband and my mum will often say to her, “Oh do you want to go and put on some leggings”. When she had the big lump in her neck, my way of dealing with that was to draw a face on it, but their reaction was to offer her a scarf. She preferred the face. I’ve always let her choose what she wants to wear and whether or not she wants to cover anything up – which she never has. She’s an eight-year old girl, she’s sees her friends wearing little cropped tops and she wants to wear one too. I would never say to her, “Are you sure you want to show your tummy?” If she wants to wear it, that’s what she’ll wear. I would love her to have the self-confidence to wear a bikini on the beach when she’s 16.

A thing that I really appreciated from the burns unit was the integration with her nursery and then later with school. The play specialist came down and spoke to all of her carers, showed them how to support my daughter, how to change her nappy, do her massage and creaming etc. They also did it again when she started school and at each school transition, which I thought was absolutely fantastic. The pair of us went into the school and we talked to each of the classes. We talked to Years 1 and 2 as a group, we talked about burns injuries, we talked about disfigurement, and we talked about fundraising for charity. We also spoke to my daughter’s class and she really appreciated it. She loved being the centre of attention. She has quite often asked, every new school year coming in, “Oh Mummy, can you come in and talk to the school again?” She also really appreciated the other children knowing without her having to tell them all the time. She gets a bit frustrated by having to explain it time and again, because she often gets reactions like other children sort of retracting their hand when they see her hands. She’s learnt the ‘explain, reassure, distract’ technique. I’ve not taught her how to do that, it’s something that she’s just naturally learned to do.

What she LOVES it looking at photos from when she was in hospital. She’s always showing them to people when we’ve got visitors. I’ve got some, not many from when she was actually in hospital, but plenty of her journey since. I have requested some from the hospital though. I’ve got one photo of her in intensive care and she loves looking it. She has a book that the staff in the hospital made for her. They kept a diary and all of the nurses and her visitors would write in it for a couple of months. And then when she went to nursery they wrote in it, and other times people have just written in it, again to help her one day understand her journey.

She still has a long way to go on her journey. She still has regular surgery for both functional and cosmetic improvements. I get my strength from her.

We were on holiday. We go for four weeks every year and it was one week before we came home. It was a Saturday night and we were all sat outside on a warm sunny evening. As it happened, I’d just got up to go into the caravan to use the loo. My son was sat in a camping chair and he’d crossed his legs and was leaning forwards with a marshmallow on a stick. As he lent forward to toast his marshmallow over the brazier, his chair went beyond the tipping point and he fell into the fire.

I heard the most awful, dreadful, dreadful piercing scream I’ve ever, ever heard and that’s when he’d fallen in the fire pit - a metal container filled with burning wood. I thought he was dead at first. I thought “What…?” I couldn’t even imagine. I obviously went dashing out as quickly as I could and my husband was chasing after him because he sort of just ran. Even though he’d fallen into this fire and it was his leg, he just ran. It was as though he was trying to get away from the pain. My husband sort of got hold of him and dragged him – half carried him, half dragged him - over to this standpipe and started the water straightaway on his leg. I went over, instantly, and I held onto him and we both stood and got soaked under the ice-cold tap for the next 45 minutes until the ambulance came, by which time it was pitch black.

I think the worst feeling was just “What are we going to do?” We’re in this tiny little camp site, literally in the middle of nowhere, off the beaten track. “What do we do?!” That probably wouldn’t have been my reaction in England. But I think it was the remoteness of where we were. I knew there were hospitals an hour away, but all I kept thinking was “He can’t not have his leg under this water for an hour in the back of our car”, the pain was just unbelievable for him. The only thing that was, not even making it bearable, making him able to cope, was the cold water on his leg. I think we just felt helpless. But the other people were wonderful. There was a chap in the caravan next to us that also stood in the water for the whole time with a torch on so that we could keep assessing and see what was going on, and describing it to my daughter that was in England at the time. She had just qualified as a children’s nurse and she’d done a lot of her placement on a Burns Unit – my other daughter was sending her photos at the time and texting her for advice.

The ambulance came and took him to hospital. We had the basic conversational holiday-type language skills but certainly not the skill for a medical conversation. Initially, they were saying he would need skin grafts but as it turned out he didn’t need that. They treated the burns with all sorts of amazing different dressings. Sheets of stuff - all these loose semi-liquidy type sheets - and then there were things wrapped all round that, and then there was something else wrapped around all the outside of that.

He needed gas and air while they were doing everything and - this is going to sound dreadful - I didn’t look at it really as it was pretty gruesome. I’m a bit squeamish. All my children have always known that if they cut their finger they go to Daddy, not Mummy. The staff were wonderful with him though, although he didn’t know what they were saying - that was quiet difficult. It was also very hard to see what he was going through. The poor little soul was screaming out in pain because of what they were doing, but in between he was giggling because of the laughing gas, which was quite funny. At 5 or 6 o’clock in the morning they said that my husband could come and pick us both up. The whole evening was just horrific.

He needed crutches for quite a while afterwards but, at first, he couldn’t have moved his leg if he’d tried. It was bandaged from literally the top of his thigh right down to his ankle and it was completely stiff. He obviously couldn’t go anywhere, he had to just sit with his leg up. We had two more trips back to the hospital, before we came home, for his dressings changing. He had to have gas and air for those because it was still painful but, for me, nothing was as bad as the initial shock and the standing under the tap, with the water down him, that was the most awful bit.

Everything that the doctors and nurses did, we were pleased with and satisfied with. Each time he was treated, even though we didn’t know what they were doing, we knew that they were doing what was best for my son - we had complete trust in what they were doing to him even though we couldn’t understand it. When we got home we were under the care of our GP. I rang our GP, told them what had happened, and my son was straight in to see them when we got home. They took off/continued where the other doctors had finished.

My son is fine with the injury. I think it was a bit more of a story to tell people at school when he got back from the summer holiday! His scars don’t bother me in an embarrassed kind of way either, they’re just part of him now. I don’t think “Oh dear, my child looks dreadfully scarred”. The only way they bother me is that every time I see them they remind me of what happened. It brings it back. We are so thankful - it sounds awful - we are very thankful it was just his leg and not his groin or something. If it’d been his groin, round his penis, that would have just been so much worse for him.

Since the burn, we’re very, very cagey about camp fires and things like that. My husband was brought up with camping with his family in the 70’s, where you’d have a fire outside the campsite, so he brought that into our marriage and we’ve had back garden fires for years. We have had a fire pit from even before fire pits became popular! We’re the kind of family that likes to have a glass of wine on a warm evening with a fire and some quiet music to listen to. We’ve done that for so many years but this has certainly made us think differently about them. Occasionally we do still have a fire but we certainly keep well back from them.

It’s over a year ago now and you do move on, you deal with things. But, at the time, we had some friends from England that were coming out to spend a few days with us on holiday. When they got there, without us needing to say anything, before they’d even seen my son in his bandaged state, they said they could tell just by looking at my husband and myself that we were shell-shocked. They knew something was wrong as soon as they saw us because we just looked dreadful. Having to tell people what happened was so emotional.

A year later, I can still feel upset but I obviously can cope with it. However, when we got back from the holiday, just over a week after it’d happened, I was ringing my Mum up to let her know that we were back and she asked the usual question, “Oh are all the children alright?” Honestly, I hardly stopped myself crying on the phone when I was having to tell my Mum. You’re going through it – every time you tell somebody, you’re bringing it back and you’re going through it again. Certainly, for months afterwards it was very upsetting, and sometimes even now.

As soon as you’ve got to tell somebody else what’s happened, you can be coping, or appearing to be coping fine, and it’s the articulation of it to somebody else that can then set you off. As well as the awfulness of my son’s injury, it was the slight impotence that we felt, just the thought of “what are we going to do?!” that I think really, for me, added to the situation. Normally in a situation you know what to do and you’re in control and you can cope with it. But in that situation, literally, miles from even the nearest village, in a foreign country, it was just such a complicated, helpless situation that I think, for me personally, had a lot to do with making it so much worse.

Obviously, people still ask how his leg is. This year we went back to the caravan and we saw the people that had been there at the time. When they saw us, the very first thing anybody said “Oh, how’s your leg?” - it’s emotional having to go through it again and tell people. Having people ask him about his leg, or ask you about his leg, definitely still brings up difficult feelings. My husband sees the benefit of talking about things whereas I’ve always been a bit of a closed book. It was initially so difficult to even get out what had happened without feeling very, very upset but, it might have been nice to have somebody to talk to. Maybe it would be nice just for somebody just to be able to say well actually what you’re experiencing is normal. I think my son seems far more ok about it than I do and he’s the one that it happened to!

It was in a supermarket café. I’d just got a cup of tea, put it down on the table, and her pram was sort of alongside. It was that one day where she leant out; she’d never done it before, she’d never reached for anything out of her pram. The teapot was really colourful and she just poured it onto herself.

I actually saw it happen, I saw her pull the mug, so I knew it was happening, it was like slow motion. I automatically got her clothing off her. She was screaming. I was just trying to get the clothing off her and then I ran her into the loos and put her under a cold tap. The sink in the loos wasn’t big enough to get her under, but the staff were brilliant, they said “Bring her in here, we’ve got the big kitchen sink with a hose attachment”. They put that on cold and we just washed all of her clothes down and, whilst that was going on, someone had called the paramedic. As soon as the paramedic arrived she called the air ambulance.

I didn’t really get to see the burn until the air ambulance came. The doctors got out and assessed her and they decided to go by road to the hospital. It was when we were in the ambulance and they were doing the observations on her that I realised I’d handed her responsibility over to someone else. That’s when I really realised what had happened and saw it for the first time, it was red and blistered. It then became personal rather than just a thing I was dealing with.

I was still trying to go through the motions of doing everything I should do: trying to contact my husband, and my Mum, trying to tell people where I was and make sure everyone knew what was going on. I obviously wasn’t going to go into work either – this all happened before work, in the morning. I was working reduced hours at the time because she’d only just gone to nursery for the first time and I’d only just gone back to work.

She’d calmed down by then. I can’t remember whether they’d given her anything, but she’d stopped screaming. She’d started to smile at the doctors and I thought “She’s ok”, she’s alright, and everyone was saying to me, including the doctors, “Oh we see this all the time”, so it kind of made it more ‘normal’ I suppose. I was like “oh well, ok, they know this isn’t unusual.” And that made me feel a bit better.

Not very long before the accident she had a fall on the kitchen floor. I took her to hospital because I wanted her checked out because she’d banged her head on the tiles. That accident prompted social workers to get in touch. So, as soon as the burn happened, my overriding anxiety was to do with whether she was going to get taken away from me because it was another injury. I understood that social workers have got to do a job and they’ve got to look at child protection, but the threat of having social workers ask me about the circumstances of an accident… You’re already dealing with a massive trauma and you’re already trying to look after your child. You’re worried about them and I think you feel bad enough already… I was so anxious about losing her, either one way or the other. I already blamed myself, I didn’t want anyone else to blame me from an authoritarian point of view saying my child was in danger. So, when I realised that there wasn’t going to be that extra hassle, I was very relieved and it meant I could concentrate my efforts on looking after her and being with her, but I was very scared that she was going to get, in some way, taken away from me, either because she was going to die of shock or injury or someone was going to come along and say “You’re an unfit mother”.

She had to have two general anaesthetics. She had the first one where they did dermabrasion and cleaned up the burn site, and that was on the day it happened. It was only probably later that night when she came out of surgery that I completely fell apart. Seeing her wrapped up like a mummy and having to hand her over for a general anaesthetic and not knowing what was going to happen to her was awful - she was seven months old. The staff were brilliant and used to it but she’d never really been out of my care since she was born so I found that quite difficult. I was already really scared that she was going to die of shock. Just go. That was awful. It was like “I can’t do anything”. I felt really helpless. And, I was still waiting for my husband because he’d been in a meeting without his mobile phone turned on.

It was nice, in a way, to hand over responsibility of her to medical professionals. I think having complete trust in the staff helped me to cope with it all. I always felt very involved in whatever they were deciding for her. Obviously, she couldn’t make decisions for herself but they were very good at explaining, and allowing me to take time to think about stuff. They didn’t really give me a choice about the surgery but that’s probably because it had to be done.

When it happened, I was straightaway, probably quite vainly, thinking of scarring for her, because she was a girl, and also thinking about how it was going to affect her. Hoping that it wasn’t going to affect her. Hoping it was a surface burn and that we’d caught it in time and we’d managed to get it cold enough. But it also made me realise that she was so fragile. I obviously blamed myself for letting it happen. That still goes through my mind, that’s the enduring thing, the blame.

When she was discharged from hospital the outreach nurse came to our house every other day to change her dressings. Then, about two weeks later, she came in and said “I’m going to refer you back, this isn’t healing” and that was a pretty hard thing to take because not only did I have to worry about her chest scar but obviously the donor site that they were going to use as well. A few days later, on my birthday, she had the skin graft done.

I felt a bit pressured by the doctors at that time – that was the only time I felt it was completely out of my control – we had an outpatient appointment and three doctors walked in and said “So what we’re going to do in the surgery is…” without sort of explaining why the surgery was even needed. Obviously, they’ve got a job to do and they know what they’re doing but for me it was like “Hang on a minute, you’re about to take my daughter away for three hours and take skin off her leg and put it on her chest and she’s seven months old”.

Also, not long before it had happened, I’d been discharged following treatment for postnatal depression and I think this accident caused the anxiety to come back. Even now, I don’t like boiling water, I don’t like seeing boiling water, and I don’t like seeing steam. I’m quite anxious and I’m over-protective of her. I’m less carefree and I’m constantly saying to her “Be careful!” I suppose someone that hadn’t known what had happened to her would think, “Crikey that mother’s really stressed!” I now think about the worst that could happen the whole time whenever she does anything.

Looking back, the most difficult thing to cope with was seeing her injuries. It started off looking awful and then got even worse when she had the skin graft. It has been gradually getting better but I think it’s just that realisation that she’s going to live with that for the rest of her life and it’s in an area of her body where it will show as a girl. She can’t wear polo neck tops her whole life, so there will parts where it’s going to show and I just don’t want other people to comment on it. I suppose I want to protect her from being asked questions about it.

I would hate for her to ever be bullied because of her appearance. I hope that she can always just say, “Yeah, I got burnt when I was a baby” and hope that that shuts anyone up that starts asking her. But I remember when she was probably only about six months the other side of surgery and it was still bright red and she had all the stitch marks still on her and she had the donor site redness and I took her swimming to a baby and toddler session and luckily, you know, she was too young to understand but I was very conscious of a lot of children pointing at her and asking their parents “Why is that little girl’s chest like that?” or “What’s that on her?” and I was just like thinking “God I hope that she grows at the same time as that’s fading and she doesn’t become aware of that”.

I try and normalise it for myself as well because I never want to be around her treating it like it was something bad. Obviously, it was a bad thing that happened but we can’t change it so we’ll just get on with it. And I’m happy that she talks about it. It looks a bit like a butterfly so we call it her butterfly and we’ll say “Oh you’re really lucky because not many little girls have got a butterfly on their chest” but I think overall I spoil her now. She’s an only child so I might have done it anyway but I’m more protective of her and it’s probably one of the reasons why we’ve paid for her to go into private school, to protect her from kids being bullies. I don’t spoil her in terms of she gets what she wants but we do a lot of ‘good behaviour, great reward’ so I probably spend far more money on her in terms of taking her riding, taking her climbing, doing things with her as mum and daughter than I might if this had never happened… and she probably knows it! I can justify to myself that yes, I spend a lot of money on her and do a lot of stuff with her, but look what she’s been through.

Looking at her scars does still bother me and she still itches it. She gets blood spots occasionally and I say to her “Is that itching”. It’s really vigorous scratching she does of it but then she won’t touch it for a few days. So, I don’t know whether it’s just scar tissue stretching and new skin, but at the moment it’s itchy. Her scar is very soft now but, I suppose it depends which light you see her in, sometimes it’s more obvious and sometimes it’s not; it also depends on the temperature. When she’s cold, her skin changes colour and the scar doesn’t. I become very aware of it sometimes, and its size, compared to how big she is at the moment. I know it’s not going to grow so it will become less of a problem I suppose, or less of an obvious feature, but it’s where it is and how it looks… it’s kind of got that marbled, slightly shiny appearance.

Looking back, looking after a very small baby who was at the stage of reaching and scratching, and trying to crawl, and all of this at the same time was hard. If someone had said to me at the time it happened, “These are all the things you’re going to have to go through in the next two years” I’d have fallen apart completely but because everything was new and novel and you went from one thing to another and it wasn’t as bad that way.

I did receive support from the Burns Unit Psychologist. I probably had three or four sessions with her over about six months. She helped me to cope with the blame and the ‘what if’s,’ and just generally accepting it and moving on rather than trying to turn the clock back and change anything. I think it was just helpful to talk to somebody that wasn’t a family member that had maybe seen it before. she would say “Lots of people feel that way” or “You’ll see it differently in a couple of years” from her experience of talking to other mum’s, and she kind of gave me some ideas of how other people have got through it.

I think that it was important to access support because I ended up having to explain what had happened to a lot of people. Whether it was to my work or her nursery, I was always explaining it and it always was because of something I’d done. That does kind of drive it home to you that it was one thing that you did that changed everything and you can’t turn the clock back. Talking to a psychologist just allowed me to take ME out of it, and talk more about the injury and how we were going to deal with it. Having some support and finding out that you’re not alone and everyone in that unit has had some form of burned child was important to me. When I looked around that unit, I realised that she was really lucky because it didn’t hit her face, her eyes, or a joint. It might sound awful to say she was lucky because she was burnt but relatively there’s a lot worse that could have happened.

I think it’s important for parents to talk about their feelings because initially you feel like “God, I must be the worst mother in the world” and then you find that it happens all of the time. I remember a young female doctor saying to me, “Don’t worry, we see this all the time – this is what we do.” Straightaway, that made me feel so much better because I didn’t realise how often it happened. I’d never met anyone who’d had a burnt child until I had a burnt child, and then suddenly a couple of people at work said “Oh, yeah, when so and so was young, they rolled over on a hot water pipe by the bath and …” you know, and you find out suddenly that there are all these people that have been through a similar experience.

One of the things that has been hard to manage is slow scar progression. You always want things to happen NOW but having someone put a timeframe on it for me of, like, three years meant that I thought I’m not going to worry. She’s turned four now so it’s three and a half years since the burn and now it’s got to a point where the pace of change is really slow. Another thing with the scar that really irritated me was six months after the burn, just after she’d turned one. She had photographs taken at nursery. She was wearing something where the top of her scar showed and, when I got the photographs back, the photographer had airbrushed the scar out. I went apoplectic! I was like, “How dare you change the appearance of my child without asking me?!” “Oh well we thought she’d look better.” I said, “What do you mean better? How on earth are people going to live with things if you airbrush them at the age of one”, and I said, “Put it back in, I’m not buying them!” what if she looked at it in the future and asked, “Where’s my scar?” “Oh we took it out because it looked ugly!”…you can’t do that! That was when I really realised myself that this is part of her and we can’t hide it. You also see people’s prejudices.

She hasn’t got to a point of dislike or hate or anything about it and that’s what we’re really conscious of trying to keep. It’s just normal, it’s her. I’ve always said if she gets to a point where she starts asking questions or starts seeing her burn as something bad then we’d look at ways of supporting her, but actually she talks about it very freely, she touches it… if people ask her about it, she says “That’s where I burnt myself when I was a baby” and sometimes she’ll say “That’s where Mummy burnt me when I was a baby” other times she’ll say “That’s where I poured tea on myself when I was a baby” so she understands the mechanics of how it happened, and I think she also knows it was my cup of tea, but she doesn’t see it as anything to be worried or shy about at the moment. We talk about it.

There are a couple of other things I’m very conscious of. One being sure it’s protected from the sun. I always say to her, I’ve got to put loads of sun cream on your chest because… and she goes “Yes Mummy, because I got burnt when I was a baby”. When you’re discharged from hospital and the outpatient department you also wonder about how easy it might be to access certain treatments. What if suddenly there’s a miracle cream for treating scars. How would I get told that?

These days, my daughter will fling herself around, injure herself, laugh it off and people say, “She never cries does she? She just gets up and laughs.” A lot of my friends say, “Gosh she’s such a trooper!” I don’t know whether that’s due to the fact that she was in hospital as a baby and she’s had tubes up her nose and been poked and prodded, and yanked, and been squeezed in pressure vests. She’s actually quite a stoic little girl and she’s more likely to cry if she doesn’t get ice cream than she is if she’s hurt herself. I think she looks at people that cry because they’ve bumped themselves as ‘woosses’! I think she’s quite aware of the fact she’s a toughie. Initially, when she was hurt, I thought, “She’s so fragile, how can she survive this?” 30% of her body burnt and she’s tiny. But they say “what doesn’t kill you makes you stronger” and I think it really has with her.

5 years on - looking back

It’s now been 5 years since the accident that led to my daughter’s burn injury, and she is rapidly heading towards her sixth birthday and Year 1 at school. We were under the care of the hospitals until late 2015, just after her third birthday. As well as the graft, she had pressure vests and dressings, creams, sticks and silicone pads. The worst bit was that, during the very hot summer of 2014, she was in a pressure vest, which must have been so hot and uncomfortable. But she never complained.

I still have unbelievable guilt over what happened. Lots of family members say they don’t even notice the scar anymore, but I do.

The scar went through stages during the recovery - hard and shiny, deep purple, weeping, and it has settled at a slightly shiner, waxy patch with a little raised ridge across it. I worry that it’s in a very obvious place and as a girl, it will show if she wears a lower cut top or V -neck. I am fastidious about applying sun cream to it, which sometimes draws attention. It’s more obvious when she has a bit of colour to her in the summer.

When my daughter started nursery, some children asked what was on her chest. We have always been completely honest and open and tell anyone who asks. At first, she didn’t like getting so many questions, so we gave her a few lines to say that succinctly describes it. Children are curious - and honesty is the best policy. Now my daughter sees it as normal to talk about it and tell others what happened. Sometimes she says she poured the tea on herself, other times she says it was Mummy. We always make sure that she knows it was an accident. She is proud of having been in an ambulance and stayed in hospital.

Recently at school, her teacher ran a session on safety in the home as part of the PHSE syllabus and asked my daughter to stand up and tell everyone about her injury and treatment. Apparently, she did very well and enjoyed answering questions from her friends (although I am led to believe that exaggeration may have come into play!).

I don’t wallow in what happened, wishing to turn back the clock or examining the ‘what ifs’. That is very draining and negative. I want my daughter to grow up and be pragmatic. She calls the scar ‘her butterfly’ because of its shape and knows that it’s part of her. She has shown amazing empathy with other children who have visible disability or scars and is incredibly kind and caring. She was recently picked to be the buddy to a little deaf girl who started school in her year.

To any other parent going through this harrowing time I would say that things will get better although I know there are times when it doesn’t seem so. The mental anguish fades as the scars do and it will become part of your life. The human body is amazing and the medical profession is always discovering and innovating and coming up with new treatments. Talk about the injury and the scar and normalise it.

I am letting my daughter take the lead in the future on what she does and doesn’t want to try in terms of treatment and concealment and if in 12 or so years that’s a tattoo - then so be it!

My son was scalded by a cup of tea on the top of his left thigh. It was a horrible day. We were making a cup of tea for his dad who was in bed because it was father’s day. I’ve always been overly careful and I’d already pushed the tea back out of his reach because I was worried, but my son opened a pastry box lid and managed to knock the cup of tea that I’d just poured from the kettle all down himself.

The noise he made was the worst noise I’ve ever heard in my life. I’ve never heard a scream like it and I just felt sick. I grabbed him, ripped all his clothes off, ran upstairs, and got in the bath with him under the cold water. Literally, just looking at the sight of the injury made me feel sick and shaky. We already had all the burns first aid stuff in the cupboard in the kitchen because I’m clumsy, a klutz when it comes to cooking. But I didn’t use it. I wouldn’t have used it, because I just went straight up to the shower. I felt like the worst mum in the world.

In accident and emergency, when we saw it, I couldn’t believe how bad it was. It was a cup of tea! I was in complete shock at quite how much damage had been done. There was a massive blister, a flap of skin, and the doctor cut the blister off him. I found it very difficult, accepting them just cutting at the blister while he was awake, watching. That felt hard and I was worried sick to my stomach. I was constantly questioning if there was anything else I could have or should have been doing, or could or should have done… trying to work out how to make it the best it could be.

But now we’re in this situation and I just make sure he doesn’t feel like it was anything he did wrong because he’s a very sensitive kid. Even now when he sees it he still says, “I spilt daddy’s tea”. I was scared that he would take it on himself and so I thought a lot about how to talk to him about it.

Initially, I also thought about what was going to happen because the doctors were all talking about specialist units that were an hour’s drive away for where we live. I was thinking about how we were going to travel with him when the car seat would rub on his thigh. And how was I going to keep him calm and happy for an hour and a half’s drive in the car?

I was trying to plan, trying to organise. I did get angry briefly with someone in A&E who was in front of me in the queue because she was talking about a sprained ankle and I almost ran up to her and said “FOR GODS SAKES WHAT ARE YOU EVEN DOING HERE? GO AWAY!”, and so there was also some kind of anger there but it was mostly fear that I felt at that time.

We were told that it was a partial thickness burn and there were some areas that were more superficial. It did get a little bit worse for us whilst he was in the hospital because it got infected as well. He was treated with dressings as an inpatient and an outpatient but he didn’t need any surgery. The doctors decided to leave it to see if it would heal by itself. It didn’t heal as much as they’d hoped it would but it went passed the point at which it was worth doing a skin graft so we managed to avoid an operation.

Four months on, we now have a regime of 3 times a day scar massage and using moisturising cream. That will go on for about two years. We’ve made it part of our routine now. In the morning when we get up and I’m doing his nappy change we get an iPad out. He gets an episode of a television program he really likes while he sits down and I do his massage on his leg. It works out being just about the right amount of time for it. It does make bed time a lot longer though.

The hardest thing to deal with since the accident was having to stop him doing things. At various stages, when it first happened, he was still very active and the dressings wouldn’t stay on. He was still jumping on his trampoline two days after the burn! We had to stop him because it was really hard to find an adhesive that didn’t cause problems. Some would stick to his skin to the point where we’d actually have to get him in the bath to get them off because it was pulling his skin off. And really sensitive ones that were supposed to never ever do anything like that still really damaged the burn. He even got a bit of extra scar tissue from where one of the dressings was stuck.

For most of the summer he couldn’t go in a paddling pool either, which he was gutted about. And he couldn’t go swimming. That’s what I found the hardest - having to say no and having to blame it on something that had already upset him. It was hard to try to help him understand that it was because of an accident, it wasn’t his fault, and he wasn’t being punished. I try to make it very very obvious that accidents do happen and it’s all ok.

However, since the accident, I’m literally a complete and utter pain when it comes to hot drinks around my children. If people are holding my kids, or near them, then the hot drink has to stay out of reach and on a completely different table.

He’s also very aware of it. He does talk about it or mention it sometimes. When someone else carries him, he says, “mind my poorly leg”. Even though it’s absolutely fine and doesn’t cause him any pain, he’s still conscious of it. If you ask him to eat his dinner up he’ll say, “yep, need to eat my dinner up because it’s going into my poorly leg to make it better”. I think he’s so aware of it because he went back to nursery while he still had dressings on. My husband and I were very clear with the nursery staff exactly what he could and couldn’t do. He was kept away from the water table and the sand, and things like that, because we couldn’t bath him. The staff made sure that everyone was very careful of his leg, and because they made quite a big thing of it, I think it’s just become a habit.

Looking back, when we were in hospital, I found the fact that you always saw someone different quite difficult. It meant that the only person that had a really clear view of how the burn had progressed over time was me and so I felt that I had quite a lot of responsibility. I was helping to make decisions about treatment that I didn’t feel like I knew enough about. And then, sometimes, the consultants and the nurses didn’t always agree with each other. The nurses would say one thing and then the consultants would come and give their opinion. They all had slightly different opinions - obviously because people always do - but it was quite hard thinking that, if it’s the wrong call, it could really affect someone’s life, my son’s life, who hasn’t had any say in it at all.

And because I don’t have medical training the staff don’t have any reason to really listen to me. At one point I got quite forceful and I had to actually start taking photos of the wound and having them with me to just show what was happening using different dressings. I felt like I was being a smart arse and I hated feeling like I was telling people how to do their job. But, it was my child and I had to get over it and think of him first. Luckily, they don’t seem to hate me now, they were all lovely when we left!

The first day we visited as an outpatient, a counsellor came to see if we needed to talk, or if our son needed to talk. They were really good. They stayed for a bit and talked through what happened and how we were feeling. My husband doesn’t really go for that kind of thing so he mostly sat and listened whilst I bent the poor ladies ear off about everything that had been going on. It was good for me to actually say that I felt guilty, and that I felt like it was my responsibility, and that I couldn’t helping thinking it was my fault. I appreciated having someone try and argue with me about that, to say, “of course it’s not your fault, don’t be ridiculous. Everyone always feels like that but it’s really not your fault.” I feel like it was completely my fault, even if I know it wasn’t really, because I’m the parent and I think that it’s my responsibility, even if I didn’t cause it or couldn’t have mitigated it. But, it was nice to have someone tell me it wasn’t my fault. I take responsibility, it’s just who I am. I’ll always take responsibility for it.

However, it is useful to know what other people feel in similar situations. I was glad to get that support but I wouldn’t have thought to seek it out myself because I thought, from my perspective, that my son was the one that needed the care. I hadn’t really thought about the fact that I was struggling, or that I would struggle emotionally with it. It kind of felt self-indulgent to have my own support. I think maybe it might have helped to relieve my guilt a little if my son had been the focus of someone’s emotional support instead of me.

Now, when I see the scar, I still feel guilt. Every time I see it I think, “that’s not going to go away”. And, it kind of brings back the whole, “if I’d done something differently, this might not have happened.” He’s got that forever. He was too little to have had any kind of control. I’m supposed to protect him. I’m supposed to, look after him. That’s my job, but I didn’t. And now it’s there. It’s big, and its red, and it’s obvious. It’s a bit bumpy and it’s going to look different forever. It’s never going to go away. Although, I do feel quite lucky, in a sense, that it’s on his upper thigh so it’s only going to be seen by people who he’s happy getting undressed in front of. And, to be fair, if he’s doing that then he knows them well enough to deal with it.

I feel guilty and I wish that I could know whether the stuff we’re doing now for the scar is making it better. I’ve been told it’s still early days but I just don’t see it getting any better from where it is now. I’m pretty sure that I read stuff, and that they said that it will get lighter over time, but there will be some sort of pigmentation changes and that just depends on the skin. It’s the unknown about scars that’s hard as well as not knowing which moisturising cream to use! Worrying about moisturising cream is silly but they just say use whichever suits his skin the best. Short of buying up the entire range in the shops, how will I know which is the best?!

Other than worry about moisturisers and whether the scar will fade, the biggest problem I have managing my sons scar now is that we can’t go out in the sun, and my child adores being outside, and isn’t fond of clothes! We now have lots of the same pair of trousers from Matalan to keep the scar out of the sun.

Despite everything, I feel like we were very lucky and I’m so proud of my son… but my husband hasn’t had even a warm cup of tea since!

On Bonfire night, November 5, 2016, four-year-old Maisie Roe sustained burns from a firework accident that took place at her home. Stephanie, her mother, is very keen to raise awareness of the dangers of having fireworks at home. In her own words, Stephanie explains the events of that evening.

This account is shared with permission from Devon & Somerset Fire and Rescue Service and the Children’s Burns Trust.

We were really looking forward to going to the local pub for the professional display that they were putting on but Maisie’s sister was feeling poorly and so we decided against taking them all out. My husband had been into town and came back with a small box of silent fireworks from a newsagent to do in the field. I thought nothing of it as I had always grown up with fireworks going off in the garden at home and we’d done them ourselves before.

That evening just after 5pm my husband set the fireworks up in small field behind our house. He is a sergeant in the army and the most safety conscious person I know. My mum, Maisie and myself stood ten meters away – twice the recommended ‘buffer zone’ – alongside her brother and sister and waited for the fireworks to start.

The first was a small Catherine wheel, the children were distinctly unimpressed! The next was a firework that sent small flares into the air that exploded into pink colour. The first four went up one and after the other and then a pause. The fifth flare instead of going up flew horizontally across the field and everyone started screaming. It was only as it exploded and Maisie’s scarf caught fire did it become apparent the flare had become caught in her clothing.

My husband had a bucket of water next to the fireworks and he immediately threw it over her, while my mum who is a nurse, started to pull off her clothes. I’m a police officer and have been for 10 years and I’m usually quite good in a chaos situation, but when it’s your own child it’s so different. I just stood there screaming. I remember my mother screaming instructions at me and the next 24 hours are a daze.

I ran to get the burns kit from the barn and called the ambulance. I felt like the most awful parent in the world ringing the ambulance on bonfire night because our child had been burnt. The operator was brilliant, so calm and reassuring.

When the paramedics arrived, they gave Maisie morphine immediately and said she needed to go to hospital. When they checked the dressing my mum had put on, I remember thinking it didn’t look that bad, that we’d probably have to stay in overnight in the local children’s ward.

We went to the A&E in Barnstaple and the Doctor said he thought some of the burns were full thickness so we would have to be transferred to Bristol.

We decided to drive her up, as the ambulance would have taken five hours. We went straight into the specialist burns unit, which has four beds, and it was then that the seriousness of the situation started to sink in, by then it was about 1.00am the next morning.

Maisie had temporary bandages put on by the nurses and was taken to her room, my husband and I slept next to her, even though she had been given morphine she tossed and turned all night. The next morning they gave her a bath to wash the burns and see how bad they were. They warned us it was going to be horrible and we didn’t have to stay, but there was no way we were leaving her. Horrible was an understatement, I’ve never heard a child scream in pain like that. My husband had to hold her down as the two nurses weren’t strong enough.

Later that day she went into surgery for the first of many times to have her burns scrubbed. She came out completely covered in bandages. From there on, she was in hospital for another seven days, having a total of 5 general anaesthetics. On the second night, she developed a severe temperature, and I remember the doctor telling me that the burns wouldn’t kill her but an infection could.

In order to check her they had to take blood and I remember her screaming, it took me and three nurses to hold her down. That morning she went back into surgery to have the thickest burns cut out because of the possibility of infection. Thus continued a day in day out routine of painkillers, medication, scrubbing, and bandage re-dressing. Day five she had the first skin grafts taken from her legs, which Maisie found more painful than the burns. Day six involved a further skin graft as the first hadn’t stuck properly.

That weekend Maisie was allowed to come home temporarily as we had to attend my father’s funeral. She was literally wrapped in cotton wool on the sofa and everyone was so pleased to see her. Maisie needed a cocktail of medication every couple of hours and I remember feeling completely stressed with this responsibility, having relied so heavily on the nurses to keep her as pain free as possible it was now down to us. On Sunday, we took her back to the hospital for another three days, where she had a third skin graft.

After this, she came home to be treated as an outpatient and the Specialist Burn team visited her every three days over a two-week period, to change her dressings. This took place in the bath and, even though she was sedated, she kicked and screamed.

Now the scabbing has healed she can wear a silicon dressing. Once a month we return to Bristol for a review with her plastic surgeon. The next stage is reducing the worst of the scars as the body always over heals itself, which is why you get the lumps and the bumps. They are now talking steroids and laser treatment and it will be two years before it is going to look like the end result.

Maisie is doing really well and the amazing thing has been her resilience and positive spirit. In January, she went back to school. At first, she wasn’t allowed out to play, but now she is completely back to normal.

The doctors say that Maisie was very lucky – if it had gone a few inches either way, she could have been blinded or have had breathing difficulties for the rest of her life.

I wanted to tell Maisie’s story so if anyone considers having fireworks at home to think again and instead attend their local firework display. I remember in the past we didn’t think twice about having fireworks at home and when one firework whizzed off in the wrong direction it was funny. Now when I hear of kids throwing them at each other in the street it makes my heart sink.

I wouldn’t want another family to have to go through what we have. When I think how relatively minor her burns are and how much pain she has been through it’s terrifying. Also, how long the route is going to be to get her back to normal, it’s very scary. I always try to remember it could have been so much worse. We will certainly never, ever have fireworks at home again.

In this video, a mother talks about her experience when her son was scalded.

Supporting Children with Burns

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This website has been developed at the Centre for Appearance Research, at the University of the West of England (UWE Bristol). UWE Bristol also funded its development and the research it is based on. It is independent of the NHS but the content has been reviewed by health professionals who work in NHS burn services.

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