Mother. South East London. 22.9.2016. (updated 13.8.2020).
“The final attack started no different to any others. She would have this cough, and sometimes she would cough, and then she would be able to control it, and then she’d be fine and go back to normal. Other times there would be a lack of oxygen and she would completely collapse, and technically she would die, she would go blue.
Every time she coughed I panicked. You didn’t know which way it was going to go. By listening to her, all her coughs sounded the same, but she knew. Whenever she was coughing she would go blue, look terrified, and then the moment it finished she just went back to normal as if nothing had happened. And yet there were other times when I would have to call an ambulance.
Looking back I don’t know how I could have maintained this. I never thought she would die, but I couldn’t see how it would be maintained, especially when she would collapse and I would have to resuscitate her. The question was, how many times can you resuscitate someone. I was resuscitating her constantly because she was out, and I would have to call an ambulance. I probably resuscitated her about 30 times. When you’re in that , it’s very difficult, it’s very stressful. But I never thought she would die. Maybe I was hoping for something that would control it. I think I was hoping, I was living in hope.
She was the one having the attacks. They were horrendous. She knew she wasn’t going to last. She said so. Even though she was only nine she didn’t have a fear of dying. I only heard her say it twice, but once was too much for me. I think about her not being here every day, but then I think about those attacks, and the lack of oxygen to her brain when she collapsed, how would she have dealt with it if she was put in a wheelchair or something?
When she would come round in intensive care, which was absolutely horrendous, because you never know how they are, they’ve got tubes all over them, and you never know how they are. First off, when they blink you’re just grateful they’re alive, and then bit by bit you think ‘what impact has it had on them’?
I remember her saying to me: "If you love me you’re going to have to let me go”, and I said, “never, absolutely never” and she would say “alright mum”.
So the final, final attack, we were both at home and she was struggling. I called an ambulance. It’s a very difficult thing to live with. I tell myself that it wouldn’t have been the last one, there would have been more. I could see she was going to have a seizure, and I had to explain to the twins what was about to happen as they’d never seen it before. I wasn’t worried as it happened so many times before and she had recovered. She didn’t recover. What was different about that one I’ll never know.
I know that on the night she died pollution levels were higher than normal. I know by her records that something was airborne. Airborne, but what? The doctors wrote on her records that it was ‘something airborne’ that triggered the attack. When she was alive we never really thought about that. Now we know a lot more about pollution."
Boy aged 13. South East London. 10.8.20.
"I got asthma when I was really young, like one years old. I basically got it right away. Right now I’m taking the Synacor, I think it’s a new kind of inhaler, so I’m taking that in the morning and at night.
I’ve been in hospital quite a few times because of my asthma, normally during the winter time. My asthma is quite bad then, probably because it’s quite cold. Going into hospital is quite scary because I wasn’t sure what was going to happen. Because all I knew really was that my asthma was quite bad and I had to go, and if you have to go to hospital it means like it’s quite serious, which is scary.
So it's the cold, but my hay fever can affect it as well, and my allergies. So with asthma it feels harder to breathe, like you need to take deeper breaths, and your chest feels quite tight. You can’t really run or anything. You have to sit and you can't really move around very much. When I was younger I panicked quite a lot.
Normally when it happens I’d be doing something like running around or doing sports or something, so I might have to stop and take my inhaler.
I think it’s been better during lockdown. I haven’t had to use my ventolin as much, my blue inhaler, and like I haven’t really been waking up much during the night either. I normally wake up coughing, and my sister or my mum will give me my inhaler. It hasn’t happened since quarantine.
I think that one of the things, like, during quarantine, a lot of the pollution levels went down. Because we’re right near the south circular, so there isn’t as much pollution, so my asthma is probably better because of that.
I think that they (the government) should get better cars because there are a lot of diesel cars and buses, so change them to be more environmentally friendly. Also plant more trees and stuff, because that could also help the air quality. Quite a few people in my class has it (asthma). I don’t think they have it as bad as me but like sometimes they can’t do sports and stuff as well.
If I had kids I would hope that London would be, like, much cleaner by then because, like, I’ve seen what the pollution’s done and I wouldn’t really want them to be growing up in a place like that so I would hope it would be a lot cleaner by then."
Mother. North London. 10.5.2022
"So I’m in Haringey, north London. My boy is 5 years old now. It started in the summer of 2018. It was absolutely roasting hot. For about 2-3 months it was like someone was blowing a hairdryer over the city. The air quality really deteriorated during that time. That’s when he first started getting sick. The first asthma attack that he had we went to the North Middlesex Hospital. He was put on a nebuliser for the whole night, but we left the next day with an inhaler and some strong steroids to give him to reduce the inflammation in his airways. He was 18 months at that point.
Then it happened again, we were in hospital the whole day doing reliever inhalers and steroids, hoping to be discharged the next day. Suddenly at around nine in the evening his chest started moving up and down really vigorously, and his head was bobbing with the rapid rise and fall of his chest. He was deteriorating fast. A nurse rang a red alarm beside his bed and 4 or 5 staff came really quickly. They wheeled him to a high dependency unit, put tubes in his nose called Optiflow and a cannula in his arm. It was horrifying, to see frightened his little face, nostrils flaring with the effort to get in air, muscles under his rib cage contracting fast to make his failing lungs work. It went on for hours. He was screaming and trying to pull things out. He had monitors stuck on this chest as cardiac arrest is a risk, there were wires everywhere. At about one or two in the morning consultants said he’d probably have to go into an intensive care unit at Great Ormond Street to be put on a ventilator. They started making calls to arrange it but then he turned a corner. He stopped grunting with the effort to breathe, his chest was still rising and falling fast for hours after. We stayed in for another couple of nights. You can’t leave until you can manage about 4 hours in between inhalers. We went home. Three weeks later it happened again.
By November 2018 he’d had 7 attacks in total. Two of them were life threatening, three were severe, the other two were more manageable but still needed hospital treatment. When he was well I’d take him to the park and he would just sit down on the ground. He didn’t walk much or run or climb, he was so out of breath. He barely grew because of the strong steroids. There are other mums in my neighborhood whose little ones have got asthma, two on the same street as us, and those are just the ones I know of. There was someone I met in the playground whose child had many severe attacks. They decided to leave London because of it, to find a less polluted place to live. In my son’s reception class there are thirty kids and three of them were in hospital with asthma or wheezing attacks in the first term of school, last September 2021. There needs to be major intervention from national government to make the air safe to breathe and protect children’s health."
Interviews are ongoing.