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Catherine - Interview 08

Age at interview: 27
Brief Outline: Whilst Mikey was on a Neonatal Unit Catherine took part in a trial looking at gut and bowel deformities in healthy and poorly babies. Soon after discharge from the Unit Catherine was invited to enroll Mikey onto a vaccine trial, this time she declined.
Background: Catherine is married and mother of their first child Mikey. Until taking maternity leave Catherine worked full time as a Social Worker and describes herself as White British. Catherine was invited to enroll her son on two clinical trials.

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 Catherine is married and mother of their first child Mikey aged seven months. Although a healthy baby, Mikey was on a Neonatal Unit for three and a half weeks after he was born prematurely. During this time Catherine was asked if she would be willing for Mikey to take part in a trial looking at gut and bowel deformities in healthy and poorly babies. The trial required collecting Mikey’s stools for two five day periods. The purpose of the trial as Catherine recalls was to compare the samples taken from both healthy and poorly babies for toxins and bacteria. As it was a fairly non intrusive study for Mikey; Catherine and her husband agreed. 

 
Catherine supports medical research in general ‘because if people did not participate there might not be a Neonatal Unit and I might not have a baby now’. ‘The more knowledge and experience medical staff has then the more they are able to help babies in Neonatal Care’. However, Catherine also recognised that taking part in a trial might depend on what the benefits are, particularly if it involved receiving different treatments and a placebo group. 
 
The second trial invitation came shortly after Mikey’s discharge from the Neonatal Unit. Catherine and her husband were approached to participate in the trial of a five in one childhood immunisation programme. However, on this occasion they declined. Mikey experienced a spell of poor health and so life was a bit chaotic. Thus, although Catherine supports vaccinations in principal she felt that Mikey had been through quite enough in his first two months and wasn’t convinced it was necessary to put him through any more, so on this occasion they decided not to take part. 
 
 

Advances in neonatal care have been possible thanks to the parents and their babies who have...

Advances in neonatal care have been possible thanks to the parents and their babies who have...

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And I guess I’m all, I’m all for medical research because there was a point where I was looking at you know if, if there wasn’t for, if people did not participate in medical research then there might not have been a neonatal unit and I might not have a baby now. So I sort of I get all the positives of it so it was like anything that can help move things forward for people then I’m all for that really so yeah.
 
I just think although we had our complications I was very fortunate that although very small, Mikey was very healthy. Had there been something wrong with him and he’d needed surgery or drugs I, you know, the more people who, who do, even the non intrusive sort of research, means that they’d have experience or know more, the more knowledge medical staff have that they could have helped him then yeah so.

 

 

Catherine’s son was on the neonatal ward and the trial required stool samples. The staff helped,...

Catherine’s son was on the neonatal ward and the trial required stool samples. The staff helped,...

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 The first time Mikey was on the Neonatal Unit for three and a half weeks after he was born because he was premature. I guess it was one of the researchers just came when we were by his incubator and they were doing a study into, I can’t remember the exact bits about it I’ve probably got the paperwork somewhere, they were doing a study into looking at some gut deformities and bowl deformities in poorly babies.

 
And they wanted to use Mikey’s stool samples as a comparison because he was healthy, he was just very small, he was healthy in bowl and gut we believed. So it was a fairly non intrusive study. We had to collect all his stool samples for five days and then there was a break and then we had to do it again for another five days, which actually wasn’t too involved for us because the nurses did a lot of that anyways, [laughs] so it was really quite un-intrusive for me and my husband. And, yeah they, I knew it was all anonymous, we signed consent, all of the, all of the tubes when we did do it were all, he had a number, he was not identifiable and I just thought if it could help them with whatever they were doing then that was fine because it didn’t have any implications on him really.
 
 

An invitation to enrol your child to a clinical trial may just come at the wrong time.

An invitation to enrol your child to a clinical trial may just come at the wrong time.

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 Yeah, well I can’t remember when I got the letter; it must have been through the G.P. because it was about a trial for a five in one vaccine, as part of the immunisation programme. I think we first got the letter when Mikey had just come home and I probably put it to one side and thought I’d look at that later because I had a new born baby at home all of a sudden having spent three and half weeks in hospital was like in chaos. And then they wrote to us again and after Mikey had came home he actually had a hernia, inguinal hernia on one side and then an inguinal hernia on the other side, so he was in an out of hospital having operations for the next eight weeks I think.

 
But I know I talked to I talked to my husband about that and he sort of said, “I just don’t think we should do anything to him that we don’t need to do”. Everyone’s baby is really precious, this was a baby we’d tried for five years we never thought we were going to have. Then we had him early, then he was poorly and I just think we were sort of, like we just can’t put him through anything that he’d had a rough start in life anyway. And maybe had he been a healthy full term baby with no complications I might have said “Yeah, try it” but it was just the place we were at I suppose was sort of like.
 
I mean did they talk about any side effects at all? Can you remember?
 
No the side effects, yeah it said the side effects the side effects being the same as they are for the other jabs, you know just sort of the grizzly baby for a couple of days. But I guess if you’re trying a new thing then you don’t know necessarily what the side effects are going to be do you, so, I’m not sure, I think the link between the MMR and autism is fairly anecdotal but you you’ve got to, I always think when I say that and I lecture on that and I talk to people about that at work and stuff and then I think imagine being a mum though and your baby’s healthy and then you take it for a jab and it comes back a different baby. And it may be coincidental and it may be a whole other range of factors but imagine how that would feel just living with that even if it isn’t and people telling you it isn’t would probably just make it even harder [laughs] so, yeah. It’s sort of; it’s quite controversial isn’t it.
 
 

Catherine decided not to enrol her son, who had been born prematurely, in a vaccine trial because...

Catherine decided not to enrol her son, who had been born prematurely, in a vaccine trial because...

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 So then all that sort of kicked off and he was quite, he was really poorly and I think they wrote to me again and just sort of looked at it and I thought you know what, I’m all for vaccinations. I work with people with post polio syndrome so I know and I’ve been to Africa and I know how they benefit everyone and I just thought this is my baby who’s been through so much and I’m just not convinced I can feel comfortable letting him have a vaccine trial, giving him five in one, why do we need to give him five in one, he can [noise] have all the ones he needs anyway and I just said no on the occasion. And he was, I mean he was back in and out of the hospital anyway so I don’t know whether we’d even been able to do it. But I guess, and you know, you hear all the horror stories about vaccines and I’m not sure that there’s an awful lot in them but I just thought why would I take that risk at this point when we’ve just got him home and we’ve just got him healthy, sort of [laughs]. I just thought I couldn’t live with myself if I made the decision that caused him a problem so.

 

Catherine understands the need for eligibility criteria in medical research.

Catherine understands the need for eligibility criteria in medical research.

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 No I think going back to my experiences in doing psychology and things like that, you, researchers have got to have criteria, they, they’ve got to have criteria that fits because otherwise it becomes irrelevant and you can lost in data that doesn’t mean anything. It wouldn’t be fair to put me in a fertility study with other people because there’s a reason that that my outcomes would be different and so that doesn’t teach anyone anything and then that’s not useful research and it doesn’t inform future practice so it’s sort of, there needs to be eligibility criteria. Yeah, otherwise it’s not, it becomes irrelevant doesn’t it. Its, and then it, and then it doesn’t improve anything it just, sort of, becomes a pointless task of everyone collecting data that just means nothing. 

 

Catherine understands the need for vaccines and supports clinical trials, but due to concerns...

Catherine understands the need for vaccines and supports clinical trials, but due to concerns...

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 Did they talk about any side effects at all?

No the side effects, yeah it said the side effects the side effects being the same as they are for the other jabs, you know just sort of the grizzly baby for a couple of days. [Right.] But I guess if you’re trying a new thing then you don’t know necessarily what the side effects are going to be do you, so, I’m not sure, I think the link between the MMR and autism is fairly anecdotal but you you’ve got to, I always think when I say that and I lecture on that and I talk to people about that at work and stuff and then I think imagine being a mum though and your baby’s healthy and then you take it for a jab and it comes back a different baby. And it may be coincidental and it may be a whole other range of factors but imagine how that would feel just living with that even if it isn’t and people telling you it isn’t would probably just make it even harder [laughs] so, yeah. It’s sort of, it’s quite controversial isn’t it [laughs].

 

Being in the control group, Catherine didn’t feel strongly about being given the trial results....

Being in the control group, Catherine didn’t feel strongly about being given the trial results....

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 No, I don’t know if it had finished, I don’t know how long they were doing it for, and I suppose if it had been something different I might [noise] have been more interested in the results but at that point you know there was so much else going on for us and it wasn’t directly affecting him so I didn’t I didn’t ask to see the results.

 
So when you first had the information pack they didn’t tell you at what point they might contact you or give you any when the study was going to finish?
 
No. Well they might, it might have been on the information sheet but you know I don’t remember.
 
No. Do you think that’s an important thing? Do you, would you liked to have known, you said, you know it didn’t really matter?
 
I think it would depend again what it was, that that didn’t really matter because I you know it doesn’t it doesn’t have any implications to us what they found and it would again be totally different if it was something that did have an effect on, on us. The results of the progesterone trial that I wasn’t part of will be of interest to me because I will probably be looking at them again in the future so; it’s sort of, yeah. 
 
 

Although Catherine is supportive of clinical trials, she is less convinced about enrolling her...

Although Catherine is supportive of clinical trials, she is less convinced about enrolling her...

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 One of the studies I was going to be, participate, in before we knew about my genetic problem was a progesterone trial when you when you got pregnant you’d be given progesterone. My issue with that really was I I’d had three miscarriages by then and my issue with that was that if I was in the, the placebo group I wasn’t getting the progesterone and when you’re talking about whether it’s going to help you keep a baby that’s sort of a huge, it’s not like you’re taking a you’re taking a drug to see if you think you know does it work against aspirin. It’s like if I have this drug I might keep the baby and if I don’t I might lose it and if I’m in the placebo group I won’t know and I, and that would have been a really tough call to make. As it was I wasn’t accepted because I found I had an underlying condition. So I guess it all depends, it’s like if you were saying if he had cancer and you wanted to give him chemotherapy or a placebo group why would you want your child to not have the treatment because you were in the placebo group and you don’t know and then it it’s really tough isn’t it. I guess you really have to think about each thing as you come up to it; it’s not something you can just say we’d be in or we wouldn’t be in. It would depend on the circumstances. 

 

Catherine also took part in a survey asking parents for their views on whether babies experience...

Catherine also took part in a survey asking parents for their views on whether babies experience...

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 And you talked about a third study that you’d thought about.

Yeah when he had his hernias we went to the hospital for the second operation there’s this whole, this whole baffling thing he was really a completely different baby. He went from being a settled contented baby who slept a lot because he was premature; he just slept all the time to screaming non-stop for hours and hours and hours. And all the staff in the hospital kept saying he’s not in any pain, the hernia doesn’t cause any pain, or discomfort, and yet they were giving him codeine, paracetamol and he still shouldn’t have been born. So I was like this is all a bit contradictory. And on the last day just before we left a guy came and asked me to fill out a questionnaire. And again he had an information sheet and he was doing a research study, he called it a research study into the difference, the medical opinion being that hernias don’t cause any pain and patient and parent reports of, of the changes and because the consultant had said “Oh, I hear this story a lot” and you know and he, he just had a rating questionnaire, had it affected various aspects sleeping, feeding, things like that and on a scale of one to ten could I rate various things.
 
And then he phoned, I think he asked me about the first operation when I was in the hospital and then he phoned after the second operation about, about a month later and went through the questions again. And asked me if it, if I’d had the same response and I don’t know whether I gave the same response or not, so that would have been quite interesting [laughs]. [Yeah.] But that, that would be something I’d be interested to follow up on and I have still got the information sheet somewhere because it, it impacted on, on us quite significantly being told, told that he wasn’t in any pain and yet feeling that he really was so, yeah. I’d be interested to see if it changes any policies in hospitals.
 
 

Enrolling your child in a clinical trial when you don’t know what treatment they will be given is...

Enrolling your child in a clinical trial when you don’t know what treatment they will be given is...

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 One of the studies I was going to be, participate, in before we knew about my genetic problem was a progesterone trial when you when you got pregnant you’d be given progesterone. My issue with that really was I’d had three miscarriages by then and my issue with that was that if I was in the, the placebo group I wasn’t getting the progesterone and when you’re talking about whether it’s going to help you keep a baby that’s sort of a huge, it’s not like you’re taking a you’re taking a drug to see if you think you know does it work against aspirin. It’s like if I have this drug I might keep the baby and if I don’t I might lose it and if I’m in the placebo group I won’t know and I, and that would have been a really tough call to make. As it was I wasn’t accepted because I found I had an underlying condition. So I guess it all depends, it’s like if you were saying if he had cancer and you wanted to give him chemotherapy or a placebo group why would you want your child to not have the treatment because you were in the placebo group and you don’t know and then it it’s really tough isn’t it. I guess you really have to think about each thing as you come up to it; it’s not something you can just say we’d be in or we wouldn’t be in. It would depend on the circumstances. 

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