Hazel

Oscar is 11 years old, and he was born with multiple underlying conditions including heart problems, club foot and hydronephrosis of kidneys. Oscar has had two heart operations; one to repair a hole in his heart, the other was mitral valve surgery. He used to be on prophylactic antibiotics, which has improved his health. He cannot take them anymore because of his warfarin treatment.

Oscar has multiple long-term health conditions. He was born with severe hypertonia, hydronephrosis in both kidneys, sagittal synestosis, cleft palate, and club foot. He has had two heart surgeries: hole in the heart (AVSD) repair and mitral valve replacement. His conditions contributed to his global developmental delay. He sees a private physiotherapist 132 days a year, and he also takes part in occupational therapy and speech therapy.

Oscar doesn’t become ill more often than other children, but Hazel notices that colds and flu-like illnesses have a more severe effect on him. Because his nostrils are very small, he has problems with blowing his nose. The phlegm stuck in his throat and chest often lead to chest and ear infections, for which he used to take full courses of antibiotics. Since Oscar was so prone to develop infections, he used to be on antibiotics almost constantly. Finally, he was prescribed prophylactic antibiotics, which kept his infections under control and also reduced the overall amount of antibiotics he had to take. However, since his mitral valve replacement, he cannot take prophylactic antibiotics anymore because they might interfere with his warfarin treatment. Hazel and her husband have to get the cardiologist’s clearance for all over-the-counter drugs they would like to administer to Oscar. Since he is not even allowed extra vitamins, Hazel tries to manage Oscar’s health by feeding him a vitamin-rich diet and by making sure that he does enough physical exercise. When Oscar is ill with a flu-like illness, Hazel and her family need to check his INR level more regularly and have a cardiologist adjust his warfarin levels accordingly. Hazel remembers finding the warfarin management process overwhelming initially, but she feels that the whole family, including Oscar got better at it.

Hazel is generally satisfied with Oscar’s medical care. She is very happy with their GP surgery because she found that they always make an effort to give Oscar the earliest appointment possible. However, she has noticed large differences in hospital care. During Oscar’s mitral surgery and subsequent recovery period, he was in two hospitals. Hazel found the first hospital top notch: she thought the health professionals there were well organized, available, and they always fully involved Hazel in Oscar’s treatment. On the other hand, she felt that the second hospital was lacking in communication and planning, and she thought the doctors there were unavailable and inattentive. Still, Hazel was very grateful for two nurses at the second hospital who she feels did their utmost to help Oscar.

Hazel finds it important to celebrate what he can do and how amazing he is, rather than worry about the future too much. She is very grateful for the NHS services that provide medical care for Oscar. However, she finds that there’s room for improvement regarding their therapy provision. Oscar gets 10 minutes of physiotherapy every six weeks through the NHS, which is why Hazel and her husband pay for intense private physio sessions. This has had a financial impact on them.

Hazel’s message to parents in similar situations is don’t be afraid of questioning the medical profession. You’re the child’s expert. Also, she would like health professionals to know that communication is really important and that parents aren’t stupid, they just want to know what’s happening with their child, and what they could do about it.

Hazel says be the strongest advocate for your child.

Age at interview 41

Gender Female

I would say you need to be the strongest advocate for your child. Don’t be afraid of questioning the medical profession. You’re the child’s expert. And just, you know, don’t worry, oh I shouldn’t go to the GP. I don’t want to bother them. Go to the GP if you need to. Trust your own instincts. And you know, you, well for us we have to really push for lots of different things to ensure that we get the best care. And you know, you have to put your child above anything else and anyone else. And but that’s ok, just to be ok with that not to feel, you know, being pushy or anything like that. It’s just, that is what you have to do.

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Oscar’s 7 year old younger brother is incredibly empathetic’ and understands that his parents needed to be in hospital with Oscar.

Age at interview 41

Gender Female

Yeah. I mean our other son is incredibly empathetic. I think when you’ve only ever known this life then he understands if Oscar is in hospital we have to be there and it’s not. Oscar doesn’t want to be there. We don’t want to be there but we have to because that’s what is necessary. So our other son came down to [city] every weekend and he spent his entire Easter holidays, two weeks at the end of Oscar’s bed but never complained. He just played Sudoku and read and chatted to the nurses and sort of kept our spirits up. So you know he also is an amazing person. I think, he never once said, Come home. Or, you know, anything. He just knew that we were doing what we had to do. And every morning when I called him his first question would be, How’s Oscar? What are his numbers on the machines? And things like that. So you know, yes of course you, you don’t want to be separated from your child but, you know, at that sort of level of intensity you don’t have any choice and you have to be with the one who’s very ill.

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Oscar’s parents explained to his younger brother why he is in hospital. They try to be honest without giving him too much detail.

Age at interview 41

Gender Female

And you have explained to the younger one?

Yeah we talk to him. You know, we don’t give him huge detail. We didn’t tell him how dangerous the situation was but he could see. I mean he’d often come to the hospital and Oscar would be intubated and it’s not a great sight. You know, he’d be covered in bruises and bandages and, you know, all sorts of things. They had so many lines in him. He was connected to so many machines. So, but my other son’s. At the start the first time he was a bit shocked and then after that, you know, we talked to him about it and asked him how he feels and did he have any questions and things like that. And we tried to be as honest as possible without giving too much detail.

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Oscar has complex medical needs. He needed less time off school for flu-like illness episodes this year than previous years.

Age at interview 41

Gender Female

Yes but he’s had a much better autumn than he’s had in a couple of years. So I think 3 years ago in November and December he went to school for 6 days because he was constantly ill. So but this autumn he’s not had any dramatic infection at all. He’s had several colds but he seems to have been able to fight them without needing any antibiotics, without us needing to visit the doctor particularly.

And how do you do if he has this flu-like illness? Do you do anything to prevent, to prevent it from getting worse? I don’t know keeping him at home from school?

I keep him home if he’s got a temperature but if he’s just got a cold if I kept him out of school every time he had a cold he’d never go to school. So, you know, he needs to go and he enjoys school and so on. But if his temperature, no.

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Hazel has learned to trust her instincts about Oscar’s health and advises health professionals to listen to parents.

Age at interview 41

Gender Female

And is there anything you would like to say to health professionals looking after these children?

I think communication is really important. Parents aren’t stupid most of the time and the. We just, we want to know what’s going on with our children and that there’s a plan and. No I mean just also incredibly grateful for the fantastic care that we’ve had. He’s a very, very complex child and I think we’ve been very lucky with the care that we’ve got.

Just still say I guess to listen to parents. You know they are the child’s experts. They’re unlikely to give you false information. So yeah I think it’s just really important to listen to the parents.

The other thing we experienced once that I’ll never forget is we did go to A&E once and he clearly had double ear infection because it was oozing out of his ears and we saw a quite junior doctor and he was just, Well tell me about his genetics and tell me about this, that and the other. And I was like, No I just want antibiotics please. My son clearly has ear infection. And Oscar is so unusual that people can get sort of very fixated on that, but he’s not. I mean ok you can learn from him. I get that but at the same time, you know, he’s not show and tell’, you know, model. He just needed antibiotics and then to get out of there so. You end up repeating yourself a lot but fine if that’s going to give him the best care and that’s them being thorough and we’ll take it.

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Oscar has complex medical needs and although his mum is concerned about using antibiotics too much (and avoids them for her other child and herself), she accepts that sometimes there is no alternative for Oscar.

Age at interview 41

Gender Female

I mean obviously you don’t want to give your child antibiotics all of the time and you know we understand the affect it has on the wider community as well. And you know people are getting used to antibiotics but in Oscar’s case it’s just there’s no alternative because everything is just a bit worse for him. So in some children if they had an ear infection you can just go. Ok they can bear it for a couple of days and it will work itself out. With Oscar it won’t and he’ll be in a huge amount of pain because it’s just always a bit worse for him. And so, you know, we have to use antibiotics. And also you don’t want things to escalate. What is, you know, at the start a small chest infection if you leave it becomes pneumonia. You know, and you have to. So for us we have to use antibiotics when it’s needed. With my other child for example if he got ill I would try harder to not give him antibiotics quite so quickly. And luckily he’s, he’s a very well person and very rarely needs these things. And also for myself I would try and hold off antibiotics a bit more but with Oscar it’s just, it has to be that way and, and we want him to be safe and antibiotics have helped him be safe.

Have you discussed with any health professionals antibiotic resistance or is it something you are worried about or?

It, yeah we have with the GPs but they always say in Oscar’s case just what I was saying. He just, he needs to have it when he needs to have it and

And that’s it.

That’s it [ha ha] basically.

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