Background
Methods
Study aims
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To explore the experiences of women who took part in the EVERREST Prospective Study of experiencing a pregnancy complicated by severe early-onset fetal growth restriction
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To explore the experiences of women who took part in the EVERREST Prospective Study of taking part in a research study during pregnancy
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To provide insight to the likelihood of pregnant women agreeing to participate in the EVERREST Clinical Trial
Results
Study number | Age bracket (years) | Parity | Birth weight (g) | Birthweight centile [50] | Mode of delivery | Gestation at delivery (weeks + days) | Baby outcome |
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01 | 40–45 | G1 P0 | 460 | 2nd | CS | 25+ 0/40 | 3 months total in 2 NNUs, now well |
02 | 35–40 | G4 P2+ 1 | 714 | 2nd | CS | 27+ 4/40 | Died 9 days old |
03 | 30–35 | G1 P0 | 1040 | Between 0.4th and 2nd | CS | 31+ 3/40 | 2 months total in 2 NNUs, now well |
04 | 30–35 | G1 P0 | 563 | Between 0.4th and 2nd | CS | 27+ 5/40 | 3 months NNU, now well |
05 | 35–40 | G1 P0 | 1020 | Between 0.4th and 2nd | CS | 31+ 5/40 | 2 months total in 2 NNUs, now well |
06 | 35–40 | G5 P2+ 2 | 2030 | Between 0.4th and 2nd | Vaginal | 37+ 3/40 | Well |
07 | 30–35 | G1 P0 | 550 | Below 0.4th | CS | 28+ 6/40 | 3 months total in 2 NNUs, now well |
08 | 35–40 | G1 P0 | 2440 | Between 2nd and 9th | Vaginal | 38+ 1/40 | Well |
09 | 35–40 | G1 P0 | 1190 | Below 0.4th | CS | 34+ 6/40 | 1 month in NNU, now well |
10 | 30–35 | G2 P1+ 0 | 1053 | Between 2nd and 9th | CS | 31+ 2/40 | 2 months total in 2 NNUs and 1 children’s hospital, now well |
11 | 35–40 | G5 P3+ 1 | 328 | Below 0.4th | Vaginal | 25+ 0/40 | Stillbirth |
12 | 35–40 | G2 P1+ 0 | 472 | Below 0.4th | Vaginal | 28+ 3/40 | Stillbirth |
Interview study participants (n = 12) | UK EVERREST Prospective Study participants (n = 55) | ||
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Age (years) | 36.5 (33.5 to 38) | 34 (30 to 37.75) | |
Primigravida | 7 (58%) | 26 (47%) | |
Ethnicity: | White | 7 (58%) | 32 (58%) |
Asian | 2 (17%) | 11 (20%) | |
Black | 2 (17%) | 11 (20%) | |
Other | 1 (8%) | 1 (2%) | |
Marital status: | Married | 10 (83%) | 38 (69%) |
Living with partner | 2 (17%) | 13 (24%) | |
Single | 0 | 4 (7%) |
Broad theme | Subthemes |
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Before joining the EVERREST Prospective Study | ▪ Fertility and previous pregnancies ▪ Early pregnancy ▪ Finding out something was wrong ▪ Transfer of care |
Participating in research | ▪ Joining the EVERREST Prospective Study ▪ Being part of the study ▪ Involvement in other research |
Information and support | ▪ Information and support experiences involving other health care professionals ▪ Seeking information ▪ Support networks |
Looking back and looking forwards | ▪ Making sense of what happened ▪ Looking to the future |
Before joining the EVERREST prospective study
Fertility and previous pregnancies
So we conceived by IVF, it was our fifth round of IVF. It was quite a stressful journey to fall pregnant in the first place and we were over the moon when we had that positive test –.07
I do have diabetes so I’d been seeing my GP about my medication and I talked to him about getting pregnant. The GP referred me to X ((hospital)) and by the time I had that appointment, I found out that I was pregnant. That was such a shock ((laughs)) – 09.
Early pregnancy
I had a little bit of evening sickness rather than morning sickness but nothing irregular –.04
Finding out something was wrong
Everything was going really smoothly until our 20 week scan … … … … they said that the baby was curled up in a ball so they couldn’t do the measurements but they said that happens. So we weren’t so worried at that point and then a couple of weeks later the same thing was happening but the measurement that they could take they said that the baby was a bit small and they referred us to fetal medicine – 07.
Oh devastated … … Absolutely devastated. You know, because we’d so much obviously longed to have the child and that. And then to be told, you know, it’s, so it’s almost, like, you know, you’re thinking, you know, if someone’s put a curse on you or something. Like, you’ve been through so much actually to get pregnant in the first place – 01.Then I think, I don’t remember when, 24 weeks or so, one of the consultants said his liver blood flow was not right. So then it was even worse because he said that my baby might die at any time … … …………… … Yes, that was very stressful because at that point I was feeling his kicks and yes, that was really bad. I had to take some time off work. I couldn’t tell it to anyone, these things – 03.
I think it took us probably until the next day really to really realise how upset we were. I think our initial reaction was acceptance and right ok and probably a bit shocked and then trying to work out what it meant really, which I think took some time and perhaps we didn’t really work it out until she was born. But we certainly took a bit of time, yeah – 04.
I just thought, ok, well, I felt grateful that I was being referred to X ((hospital)) because I thought, oh, good, I’m going to a specialist place, I kind of felt lucky that it had been picked up – 08.
Did he say that to you in those words? ((that the baby might die at any time)) – MH.Yes, at the scan. It was like not really oh, just telling me the fact that, he may die, what can we do? I understand, you know, a doctor but they could have been a bit softer – 03.
I was on my own. It was really, really hard – 11.It was just everything as normal, until the 20-week scan in which case they obviously flagged it up as a bit small, and they didn’t tell me, they just asked me to come back, that was my hospital, asked me to come back the next week. And then I came back the next week on my own just thinking it’s because they hadn’t taken enough measurements or something, and then that I was told, oh, it was small. So unfortunately I didn’t come back with anybody because I thought it was just collecting some more data, but that was obviously quite a shock, that they didn’t let me know why they were asking me back, because I was on my own then – 08.
Transfer of care
… … I think, I don’t know, probably realised the severity of it. So we were obviously, then I know, I’ve heard of, I know X ((hospital)) and that. But on the other hand, like, then I thought, actually well I’m probably in the best place, because they’ve probably got a bit more specialist staff there as well – 01.I think, so a mixed reaction. I think it was a, oh my gosh, what is going on? What’s happening? It must be something bad if I’m being transferred there, but at the same time it’s like a, I’m going to the best place where they know a lot, so it should be okay – 02.
Participating in research
Joining the study
Yeah, it was X ((member of research team)), she was so lovely. She was really, ‘cause she was really helpful and supportive all the way through … … … It was an instant decision. It was just sort of, it was just something that we thought if it’s going to help somebody else, then we’re happy to do it – 02.I thought it was a good idea, I thought they might find a cure … ..I thought about it for a couple of minutes – 11.
Being part of the study
I’d have to say I think both my husband and I feel that we were extremely well treated, the care we were given both by the fetal medicine team, perhaps even the fetal medicine team in particular and the EVERREST study was very, very good. I think we both felt it was done with a good degree of care and we’re very grateful to the people involved – 03.
That is one thing to add that I think the fact that you know, that during that time, that there is some medical research taking place, that people are working on it does give some comfort I think. Perhaps it does make you feel less isolated at points as well, that it’s being looked at globally essentially, it’s across countries. Perhaps you also do feel less afflicted and perhaps there is that element to it – 03.
I believe that X ((doctor)) and her team saved my baby’s life, the decisions they made when they decided when to give me the steroids and when it was best for her to be born. But I don’t know if their decision making was related to the extra information they gathered as part of EVERREST or whether they would have made those same decisions regardless of me being part of EVERREST – 07.
I did a ((radio)) programme with them ((the research team)) as well, you know, they were talking about growth restriction. … …. I got involved with the programme – 01.
The travelling was tiring but I always came back calm and happy – 06.
Happy to take part in anything that’s going to help anybody else further along the line, so I had no problems with doing it or taking part in anything at all. If it benefits somebody else, very happy to – 02.
I guess we probably made the decision thinking if we join the study that we might get better care, I know they always say that’s not the case, the care will be the same. But all of those things were said to us so it didn’t help, it didn’t stop me thinking that we might get better care – 07.
There haven’t been any surprises. I probably didn’t fully understand what was involved at the time, just because I’m a first time mother and was involved in the pregnancy, so at the time I just thought if it helps X ((hospital)), I’ll help – 05.
I did a lot of research online about small babies and that kind of thing … … … .. I think I would have liked to have had or been given, or been pointed in the direction of credible studies and ones that were well thought of, rather than me having to try and find them myself – 08.
Involvement in other research
I think by the time she came to the end of her time in the neonatal unit we’d been asked to join a couple of other additional studies and I have to say I did get to the point where I started saying no. Because at that stage I felt here’s this tiny baby we were desperately trying to get her home and I felt she’d had enough. And actually I felt we’d had enough … … I think we reached the point by the end of that, what was nearly four months where we just thought actually we want to protect our child and we feel like we’ve given enough. I think the EVERREST was not a problem – 04.
I suppose I would judge each study as it came along and see what happened, but most of the time I’d be happy to take part in mostly whatever it is that’s being offered – 02.
I think if I’ve already helped by taking part in the EVERREST study, I mean obviously the next.stage for you guys is to be able to make a comparison … .. So I would be happy to help – 05.For now I will say yes, because if there is anything, God forbid I’m in this situation again, anything to help my baby, while in there. I’ll be happy to have it because at the end of the day … … if there’s anything to help her, yeah, I’d be happy with that – 10.
Like I said, I don’t want to take anything that could harm by baby, my baby was small because of my diabetes and all that – 09.Only if it wasn’t going to harm the baby – 06.
I think if I was in that position then I would want to have the gene therapy, but I wouldn’t want to be offered a placebo, I would only want to know I was agreeing to have it or not to have it; and I think I probably would agree to have it – 08.
Information and support
Information and support experiences involving other health care professionals
I was just left kind of thoroughly unimpressed with her kind of knowledge of my, well, she hadn’t read any of my notes, and her responses were very, oh, we’ll do this, and we would do that, but only based on what I’d told them, not kind of based on her having looked at my notes and thought about it or anything like that, I felt. And that appointment kind of coincided with I think it was kind of, or me or someone saying about transferring my care, and so that kind of just cemented the decision – 08.
After every scan the head midwife ((at local hospital)) who originally referred me to X ((hospital)), she phoned me just to kind of catch up how I’d got on and that kind of thing. I thought that was really nice – 08.
Seeking information
I spoke to my aunt who is also a midwife and she started giving me scenarios of other parents and friends that she knows who have been given negative reports about their scan. By the end of the day, the baby came out perfectly well. But, you know, I just suppose she was trying to reassure me about what might happen – 10.So that’s why I decided to go in the private as well to make sure, to have more than one answer, more than one, not because I don’t believe in NHS, but I just like to have more information as I can, and to see if I have any information like oh, your baby okay and your pregnancy’s fine – 12.
Support networks
I have a family. Massive family network. My husband’s family and my family, as soon as they knew what had happened, my parents travelled down from X ((location)). X’s ((husband’s)) family in and around X ((location)), so we were, you know, there was, inundated with support. So in that sense, no there was a load of support – 01.
Looking back and looking forwards
Making sense of what happened
I think all the way along X ((doctor)) had said in this particular case she would feel uncomfortable going much beyond 28 weeks, because I think she felt it was a very fragile situation. So, nevertheless I still felt very shocked when someone turned round and said, right I think we’ll deliver this baby tonight – 04.
What was bad was after I had been discharged from X ((hospital)) and my daughter was still there, going every day with my caesarean – 10.I didn’t like the idea of that ((baby transferred to another NNU)) at all. I knew it had to happen because X ((hospital)) is very much high dependency, and X ((hospital)) was nearer home, and I was travelling in every day, but it’s quite, it’s, as for any mum, it was quite traumatic –.05
I suppose, you know, I just went through a difficult time mentally. And, you know, to be fair that’s not gone away. You know, then X ((baby)) was in hospital this year with pneumonia, no last year with pneumonia at Eastertime. And then I just find that now it’s just triggered any, so X ((baby)) what I went through with X ((baby)) has just triggered something in me that any, sort of, major change in my life or trauma, it gets me, you know, it’s gets me back to that state again and I’ve got to really be careful that, you know, at the time, recognise the signs early on and take the necessary actions really – 01.
I’ve tried to explain to him ((other son)) every day. Of course he feels like he’s supposed to have a baby brother, everybody’s got a brother or sister and I’ve not. It’s like that. But I just explain to him I had operation so they took it ((the baby)) out from my uterus, my uterus is new, so in one year time I can have another baby if I desire. So it’s something like he can have a hope. If God gives me this opportunity I will have another baby in the future – 12.
I still don’t know why, I was worried at first that I’d picked something up in Africa – 06.
I think, you know, I was one of the lucky ones and we’ve come out of it the other side. And I’m sure there are stories where, you know, it’s not been such a happy ending. You know, so I just think, do you know what, it’s what’s meant to be is meant to be. And what your destiny will be, isn’t it? And so that, you know, that, it’s one of those things, just a part of life, isn’t it, unfortunately. So sometimes, you do question why you? Because you went through so much to get there in the first place. But, you know, again you’ve just got to, now looking back you’re just grateful for where she is now – 01.
Looking to the future
I went there ((hospital)) last week, they gave me some information about if I get pregnant again – 11.
Emotionally it’s sort of all mixed because of my last pregnancy, and the little one not making it. I know that this one is fine and there are no issues, hopefully, so far, but there’s always like that underlying anxiety – 02.
He was putting weight on really well ((in the NNU)), he went up from 0.4 centile to second centile quite quickly. The thing is though, he’s quite funny with food. If he’s not in the mood or the teeth are hurting, he won’t eat. But in the nursery, he eats everything. I wouldn’t say there was something wrong with him physically. It’s just he’s been playing with me – 03.