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Hyacinth

Age at interview: 42
Brief Outline: Kwame is a surviving twin born extremely early at 23 weeks. He has a chronic lung disease which makes him more susceptible to chest infections and respiratory distress. Kwame has been treated with a lot of antibiotics and his mum also uses holistic therapies.
Background: Hyacinth is 42 and works part time as a complementary therapist, artist, jewellery designer and facilitator. Ethnic background: White/Black Caribbean.

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Kwame is one of twin boys, born extremely premature at 23 weeks. Kwame and his brother were critically ill after birth and very sadly his brother passed away at the age of 3 weeks. Kwame spent 6 months in hospital during which he had heart surgery, a hernia operation, suffered from RSV (Respiratory Syncytial Virus), septicemia and liver problems. At home he needed to have 24-hour-oxygen until he was 18 months. Because Kwame was born at such early weeks, the doctors were unable to predict if he would have later complications. Initially he had problems with his vision, swallowing and he was having intense physiotherapy to help with mobility. Over time he has improved greatly, is no longer on any medication and been discharged from all the clinics. He still has chronic lung disease which makes him more susceptible to chest infections. He is also diagnosed with mild global delay and working memory problems.

Hyacinth was told that because Kwame was so premature, catching a cold could make him very ill. He has had to be seen at the hospital with a bad cold at least once every winter and has suffered from pneumonia. Typically, Kwame would develop a sneeze and temperature. If after 2-3 days he is not any better but gradually worse, Hyacinth knows he’s developing a more serious infection. Kwame can develop respiratory distress quickly. That is why Hyacinth always takes him straight to the A&E if he becomes lethargic and starts to struggle with breathing. Although not their local hospital, Hyacinth tends to take him in the taxi back to the large teaching hospital where he was born because they know him and have all his medical notes. In hospital Kwame is usually given oxygen and a nebulizer to stabilize his breathing.

Over time, Kwame has been treated with a lot of antibiotics. Ideally, Hyacinth would want to avoid Kwame being on lots of medication and has decided not to give him the flu jab. It was a difficult decision but Hyacinth says she wanted his body to have “a break”. Hyacinth is trained in holistic therapy. She is able to help Kwame with massage and burning oils to sooth him if he’s ill. Hyacinth has done a lot of research into prematurity and medicine. She reads medical papers and online information and is not afraid to question professionals’ decisions. Kwame now aged 8, is a keen St John’s Ambulance Badger, knows how to do First Aid and wants to become a paramedic.
 

Kwame has chronic lung disease. Since he was a baby he would develop chest infections following a cold or flu-like illness. When he was four years old he had pneumonia.

Kwame has chronic lung disease. Since he was a baby he would develop chest infections following a cold or flu-like illness. When he was four years old he had pneumonia.

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They was kind of just talking to me about in the winter time a lot of premature babies get really, you know like the common colds and things, just actually can make them really ill, especially if they’ve been long term oxygen dependent.

Right.

So I assumed he’d get really ill like every winter, but there was a few winters, I think maybe two or three winters where he didn’t really get unwell.

Yeah

But now every winter he ends up at, in, probably in the hospital at least once, depending on the virus…

Right

…that’s going around but he will end up in hospital once needing either oxygen or recently like a nebuliser. Yeah really because of the kind of breathing problems as well. So…

Right.

It will start off as a normal cold and then it might move, well it moves to a chest infection and then…

Yeah.

I think when he was about four it turned to pneumonia he had for about five days he was really unwell, really but usually it runs from a cold to a chest infection and then to needing oxygen or hospital support then. 
 

Flu-like illness often develops into chest infections and breathing problems for Kwame.

Flu-like illness often develops into chest infections and breathing problems for Kwame.

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Well it just kind of would start with a normal cold, kind of sneezing, I dunno coughing, feeling really tired, probably a temperature. And if it’s just going to be a normal cold or a virus after probably two or three days, yeah that’s usually the symptoms are getting better or maybe even gone. But if it actually is going into something else then it will kind of carry on, and what will happen is things will just kind of steadily kind of get worse, so if he’s got a temperature it will go on for longer until maybe Calpol and other stuff is not keeping it down. He’ll feel even yeah even worse really. And his chest, because when he left hospital on oxygen I always check his chest, so I’ll check his kind of neck and chest and if he’s kind of struggling to breathe he’ll start with his chest kind of really sucking in here, so that’s when I know it’s the start…

Okay

…of respiratory distress. And it’s usually like, sometimes he might have wheezing and sometimes he might not, but once he gets to that point where he’s actually struggling to breathe and I can see he’s struggling to breathe we’re usually at the hospital then. A&E.
 

When Kwame had flu-like illness, his asthma medication was increased to ten puffs of his inhaler every four hours. Over a five day period it was gradually reduced to normal levels.

When Kwame had flu-like illness, his asthma medication was increased to ten puffs of his inhaler every four hours. Over a five day period it was gradually reduced to normal levels.

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And then when you’re sort of sent home from the A&E do you, do they give you instructions of how to manage him at home and what to do?

Yeah, the last time he actually got it which I can’t remember when it was but it was last year anyway, we came home with an inhaler and I think it was five days, that was the longest time he’s ever had to do it but five days on an inhaler and we came home and he was having to have ten puffs every four hours which was a lot, ‘cos it’s normally just two puffs with inhalers.

That’s right, yeah.

But because his breathing had got so bad, and they did say to me yeah to kind of, and then I had to wean him off of it over like a five day period and I thought, “Oh that was really bad kind of episode.”

Yeah

But…

Yeah.

Yeah after that he was fine I think maybe for about two weeks he was kind of short of breath sometimes but yeah since then he’s been fine.
 

Hyacinth thinks an assessment of each flu-like illness episode is needed before treating her son early with antibiotics.

Hyacinth thinks an assessment of each flu-like illness episode is needed before treating her son early with antibiotics.

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I think each case is different. And I think really it’s  the parents I suppose and the  GP to kind of come to a decision about that because there were, there are times and there have been times like for instance when he did actually get pneumonia I actually really wanted him to have antibiotics because I thought it was already leading into a chest infection.

That’s right.

But because they thought it was a virus they held out and he never got antibiotics, and the chest infection became worse and worse, so they were, that time I, if I had the option of early you know preventative antibiotics I would have taken it. So I think each case is kind of different and I can’t, yeah. I can’t make that kind of blanket statement.
 

Hyacinth says antibiotics are better managed these days than when she was young.

Hyacinth says antibiotics are better managed these days than when she was young.

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Does that concern you, becoming resistant to antibiotics?

Yes it does, especially because he’s tried so many.

Right.

And had so many in the hospital. He’s had most of ‘em, I mean and I was looking up the antibiotics to see what, which ones were broad spectrum.

Yeah.

He also used to suffer with a lot of urinary tract infections as well, I forgot to say so he used to be on a lot of antibiotics for those as well.

Yeah.

Yeah and I’ve just kind of, that’s why I’ve tried to just make sure he doesn’t really use a lot because I don’t want him to run out of options when he’s older and like really unwell, and then he actually can’t use them. I think maybe even if you don’t use them for a good amount of years you might be able to tolerate them again, you know like years later. I just think it’s the constant use, the constant use that kind of makes you resistant. Yeah if that makes sense.

And does the antibiotic resistance concern you on a kind of community level or population level or is it more for him and thinking about how he’s going to be when he’s older?

Well overall I think actually for everybody because I used to take a lot of antibiotics when I was younger myself.

Right.

So for me to actually not really be into taking antibiotics, I mean I used to take, I used to suffer from migraines so I used to be on quite severe migraine medication and antibiotics and all kinds of stuff actually. Even sleeping pills at one stage when I was 17 and I used to have insomnia. Yeah and I just think, I just yeah I just kind of think the more medication you have the more, not just resistance, the more the different illnesses and diseases can kind of become much worse and then kind of not be controlled by what’s already there, yeah. 
 

Doctors prescribed antibiotics to her son ‘just in case.’ She prefers to only give them to him when he has a chest infection or urinary tract infection.

Doctors prescribed antibiotics to her son ‘just in case.’ She prefers to only give them to him when he has a chest infection or urinary tract infection.

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How much have they told you about why they’re giving the antibiotics?

Not a lot really. I mean when he was kind of first discharged from the hospital the first probably three or four years, anytime he was ill he was, they was trying to give him antibiotics.

Oh really.

Like a, “Just in case.” But I did say because he’d been on so many I think it really kind of lowers the immune system, especially if you’re doing a “Just in case,” kind of thing. So I am told really a lot about it because I won’t just give him antibiotics or medication just kind of, I won’t just give it to him like that. But if they say his chest is not clear or, or something else and it seems like it’s going to turn into another infection yeah then I will give the antibiotics.
 

Hyacinth felt Kwame was overloaded with medication as a young child and now he is eight, she feels he is much stronger and doesn’t need the vaccine. She does sometimes wonder if she is doing the right thing in avoiding vaccines.

Hyacinth felt Kwame was overloaded with medication as a young child and now he is eight, she feels he is much stronger and doesn’t need the vaccine. She does sometimes wonder if she is doing the right thing in avoiding vaccines.

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And does he get the flu vaccination these days?

No he did have it once, when he left the hospital, but yeah I’ve chose not to give it to him actually.

And why is that?

I dunno. He was quite unwell and my oldest child I’ve never given him all of his vaccinations, I’ve only given him some of them.

And yeah I just didn’t want to give him all of those. I felt like he was on overload ‘cos he was on a lot of drugs from just starting from when he was born, and especially if he got infections he’d be kind of blitzed with loads, broad spectrum antibiotics and loads of stuff and I just felt like he was kind of over drugged. So I, that’s why I kind of reduced it and when he came out of the hospital apart from kind of getting him off of the drugs, even though I did it safely with doctors support.

Yeah.

And sometimes not support at the beginning, and I’ve done a lot of holistic therapies as well because I’m trained in massage and a lot of other therapies, so I’ve done a lot of holistic therapies with him as well. ‘Cos even when he left hospital he didn’t like to be touched, because most of the, everyday it was needles and things in his hands and feet and even his neck and his head so he hated to be touched. Yeah so I’ve done a lot of kind of work on him like that.

And what about now that he’s older and not on medication, and not on medications anymore. What, what’s your sort of reasoning and why do you not want him to have the vaccine?

I actually feel that he’s now stronger without the medication. I mean I have to, you have to kind of take into account the medication, a lot of the medications he had were almost like trial and error. They wasn’t sure what one was gonna work so they blitzed a whole load. And there was a few that he wasn’t that he was allergic to, but I’d not be able to say what ones ‘cos they used maybe four or five at the same time. Yeah I just think he’s much stronger, maybe, I don’t know his constitution is much stronger without it. I know he needs medication sometimes ‘cos if he does get the bad colds and virus and needs like a nebuliser or an inhaler, so much as I don’t like it helps him to breathe so to me that’s better that he uses it maybe once for the year or twice for the year, rather than using something every day or a few times a day.

Yeah. So only, he has those only when he’s acutely ill.

Yeah.

Yeah rather than…

Yeah and I feel like I’ve kind of built up his, the strength in his body to kind of fight off more things and more things, ‘cos there’s still one of the weller, that’s not really a word but you know one of the healthier premature babies for his gestation that I know ‘cos a lot of his friends have been really unwell and they were born much later and they were just single babies as well. So yeah.

And it and do you think that with the flu vaccine as well, that he’s stronger to fight it?

Yeah.

That he doesn’t need the vaccine or?

Yeah I do.

Yeah and has that been easy to make the decision or…?

No, it’s been actually been hard because…

Really?

…he was born so early, I actually wonder am I, actually every year I wonder am I doing the right thing? But yeah it’s been quite hard.

How do you make the decision? Talk to somebody?

I just go…

Or research it? Or is it gut feeling or…

It’s mostly really instinct and gut feeling. ‘Cos if I talk to anybody I know, family, friends they will all tell me get the vaccinations.

Really.

But yeah it’s just kind of like my gut feeling.
 

When Kwame was at nursery, Hyacinth didn’t send him in if he had a cold for more than two days. She knew he could deteriorate and she wanted to respond quickly to a change in his symptoms.

When Kwame was at nursery, Hyacinth didn’t send him in if he had a cold for more than two days. She knew he could deteriorate and she wanted to respond quickly to a change in his symptoms.

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Ill? I dunno. I mean really once he kind of had a cold that went on for more than probably two days at things like nursery I just wouldn’t send him in ‘cos I wouldn’t I’d want him to be at home if he either, I’d know after the third day whether he was gonna get worse or whether it’s gonna improve. If it’s improving I’d at least give him a day off anyway or two days off. Yeah but also I used to worry ‘cos if it’s, he starts going downhill I want to be able to, for him to access the hospital straightaway rather than kind of waiting or being delayed or people not sure and all that kind of thing. 
 

Now Kwame is at school, if he is really ill, Hyacinth keeps him at home because she would worry that the teachers might miss his symptoms getting worse.

Now Kwame is at school, if he is really ill, Hyacinth keeps him at home because she would worry that the teachers might miss his symptoms getting worse.

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The only thing it kind of used to impact really is school. And because I’ve spoken to the school really about his kind of  illnesses, as long as I end up with some kind of letter to say he’s been to the hospital, or

Okay.

Or he’s ill with a yeah with a illness, really that’s kind of it. 

So they’re quite supportive?

I mean they’re quite, yeah they are quite understanding actually.

But he did used to have a healthcare plan, which they called it at the time because he was on a lot of medication and seeing a lot of specialists, he used to have to take a lot of time off of school going to appointments…

Yeah.

…so he was kind of on the radar for that. But now I mean it hardly impacts on his school at all now really.

Yeah.

Just a few times a year and they know, I’ve said to them, the school also know and the local authority that if he’s really ill I’m not sending him into school because the same way like my own mother, who’s the main other person who used to care for him can miss symptoms a school teacher is not going to see those symptoms, so I’m not taking the chance.

Yeah, when they have 30 other children.

Yeah. And it’s not fair on the class or the teacher or anybody, or me.

Yeah.

I wouldn’t be able to rest. 
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