Pre-eclampsia and high blood pressure in pregnancy
Concerns about pre-eclampsia in future pregnancies
Some women we spoke to had already decided that they didn’t want any more children, and this decision was mostly or entirely unrelated to their experience of having had pre-eclampsia. But for those women who were considering another pregnancy, the concern about developing pre-eclampsia again could be a worry. It even put some off wanting to have another child. But for others, their experience motivated them to try again in the hope of a ‘healthy’ baby or a ‘better’ pregnancy and birth.
It was helpful for Emma to talk to other women who had pre-eclampsia who then went on to have more children without problems.
It was helpful for Emma to talk to other women who had pre-eclampsia who then went on to have more children without problems.
Yeah, so and also another mum who'd had pre-eclampsia in the first pregnancy but not in the second which again was nice and sort of quite positive. So yeah the children's centre and, I think the health visitors were quite helpful as well just providing sort of contacts of who - , good support, but no specific pre-eclampsia support, it was general new mother support so.Mairi talked to her consultant about the chances of developing pre-eclampsia in another pregnancy. This helped her recognise that what happened to her was serious but also that things could have been even worse.
Mairi talked to her consultant about the chances of developing pre-eclampsia in another pregnancy. This helped her recognise that what happened to her was serious but also that things could have been even worse.
Just told to… that they would have to monitor my blood pressure, but I wasn’t told to do anything myself, or that I needed to do anything.
It was just very much this was an almost like a freak thing that’s happened to you; it happened, you're fine now, let's just hope it wouldn’t happen again. But I remember at the time she did give us statistics of how likely it was to happen. I can't remember what they were but she was very clear about how likely it was, and I mean it must have been high because she said – I remember her telling me – that she would see me every fortnight after 12 weeks, and I was called up every fortnight after 12 weeks.
Mm mm. And were those statistics helpful for you or?
Yes, I think it made it real actually that this was not something that was just a big drama at the time. Actually it was a real thing that did happen that I'd come out the other end of and I was absolutely fine. Baby was perfect but actually it could all have gone horribly wrong. And she was very good at saying that like, "This has all been fine, but don’t think it would always end up like this." If things had gone differently it wouldn’t have been a nice thing to go through.
A key issue for women and partners was whether having had pre-eclampsia meant it would happen again in another pregnancy. There was a lot of uncertainty about this. Most women thought high blood pressure problems including pre-eclampsia were more likely to affect them because of their previous history. Women who were not given a clear or definite diagnosis from their last pregnancies sometimes felt frustrated about this. Claire felt that a diagnostic label was important for finding out the risks of it affecting future pregnancies, as there were different statistics for different terms (e.g. pre-eclampsia vs HELLP syndrome).
Some women had heard statistics or percentages of the chances of developing pre-eclampsia or HELLP syndrome again from medical professionals and many searched online. Women interpreted statistics on risks differently. While for some, a slightly higher risk was not a major concern; for others, any increased risk at all was still too much. Helen X had heard that there was a 20-30% chance of her developing HELLP a second time “which is much higher than what I’d like […] I don’t like all of these ‘what ifs’”. For some women, statistics were not helpful. Because “every pregnancy is different”, Emma didn’t think statistics on risk offered much certainty. Angela saw risks as one of those “questions which I actually think can’t be answered really”.
Betty thought pre-eclampsia was a difficult condition to understand. She found there was contradicting information online and from medical professionals about the chances of developing pre-eclampsia in another pregnancy.
Betty thought pre-eclampsia was a difficult condition to understand. She found there was contradicting information online and from medical professionals about the chances of developing pre-eclampsia in another pregnancy.
Mm mm. And when trying to choose between the different bits of advice how do you make that decision from your perspective?
Well I guess one of the biggest problems is the fact that there is no cure or, and people don’t really know why pre-eclampsia happens.
So, I guess it's a lot of theses, hypotheses and I guess that changes with time with every new piece of research. Facts get changed a little bit and so, depending on who you speak to and how current their knowledge is that will shift, so that’s understandable. I guess my husband and I will take up her offer of another meeting. So, we'll just arm ourselves with a lot of research and questions in advance and hopefully, be given that she is an expert that will be the most clear and current information we can find.
However, many women said they were not in the ‘headspace’ to think about having another baby for some time after having a pregnancy with high blood pressure problems. Helen X remembered everything was “just such a whirlwind” at the time. Stephen thought a gap of about three months was about right for getting the information about future pregnancies: “a little bit of distance […can help] put it into context”. Despite different views on the timing, most women and partners agreed that there should be some opportunity or way to get information about future pregnancies (see also the section on information).
Paige thought information about high blood pressure risks in future pregnancies shouldn’t be pushed on to women straight away but that it should be clear where they can find out more.
Paige thought information about high blood pressure risks in future pregnancies shouldn’t be pushed on to women straight away but that it should be clear where they can find out more.
I haven't been given any information but then I don’t know if it would different if I went and asked for it because at the moment it's like I'm not thinking about it at all. So, I can't really comment on whether it's because they don’t care or it's just at the moment, because it isn't… something I've brought up; it isn't something they felt necessary because I've spoke to other people who've had pre-eclampsia and because of it they decided no more. So, I can see the other side of it where they're not wanting push this information on you because it's a lot of information to take on-board anyway.
It's a hard one because you're dealing with so much at the time; I don’t think you think about your next pregnancy. But then it should also be somewhere you can be able to like, with the hospitals or the doctors, that you can go and speak to somebody like… not… maybe not straight away but maybe the six week… when they do the six week check. Just give like a little leaflet and then leave your number or maybe… just something like, 'Right, if you want to speak about it again, or you want any more information then do it; then this is where you can go,' or just point you in the right… in a direction so you can come back to it.
Women made different decisions about whether to have another pregnancy after one affected by pre-eclampsia or HELLP syndrome. The possibility of being ill in another pregnancy was a big factor. Josie said the main thing putting her off another pregnancy was the chance that her baby may need to stay in hospital and they would be apart. Tracey didn’t want another baby initially: “I didn’t want to leave her [my daughter] without a mum”. Sometimes women spoke about other factors shaping the decision too, such as their age. Helen X thought this decision would be “really difficult”. Some women were very sure that they did not want another pregnancy. As Olivia explained, “this is never happening again. I’m never putting myself in that position ever again […] the thought of being pregnant actually gives me cold shivers”. Sometimes there were tensions between women and their partners on the decision. Hanna thought her husband was more reluctant than her about a second pregnancy.
Julie was unsure about having another pregnancy. She had a lot of unanswered questions about her experience of pre-eclampsia in her first pregnancy.
Julie was unsure about having another pregnancy. She had a lot of unanswered questions about her experience of pre-eclampsia in her first pregnancy.
Yes, yes, we are talking about it now. Which is something that’s, again its took me two years, because I mean, I always wanted children close together. I always wanted two close together, but after the first episode, I was just like never, ever again, because of what had happened to me, and all the midwives kept saying to me, “Don’t let it put you off.” And I was like, “How can this not put you off?” How can it not? You know, but now I just think they would just monitor me like a hawk and I know they would. Not that I particularly want that, because it sort of takes a lot of the, the naturalness and the sort of letting your body do what it needs to do. But at the same time I know that they would totally monitor me this time. Not that didn’t before. Because they did. But I mean me and my husband one of our main things, is why did they not induce us earlier? And why did we have to wait until we got to the critical point, rather than if it started on the Thursday why couldn’t I have been induced on the Friday? Rather than having to go, for things to escalate to the point where it was horrendous, when if I had it done on the Thursday I was still, oh I was still at point where I was okay. I wasn’t well, but I was all right, and things might have been very different. They might not have been. But they might have been. Amy tried to reduce her risk of developing high blood pressure in her next pregnancy, but she was unsure how much of a difference it can make.
Amy tried to reduce her risk of developing high blood pressure in her next pregnancy, but she was unsure how much of a difference it can make.
Well, obviously, I was in complete denial about it, so [laughs] yeah, I felt very nervous about it because they had said to me, after my first pregnancy and my discharge you know, at six, eight weeks last time, in subsequent pregnancies, your blood pressure will be monitored more strictly because you’ve had hypertension this time and I thought, oh great, you know, it was, it wasn’t nice, you know. I wouldn’t I wouldn’t recommend it to anybody but, you know, I thought, well, you know, at least I’m, forewarned is forearmed. There are things I can probably try and do about it like maybe lose a little bit more weight and, you know, that kind of thing. Whenever I mentioned it to anybody who’s a medical professional they were like, no, if you’re going to get it, you’re going to get it. Oh great, thanks, you know. So I don’t feel great about it honestly and I just felt I felt very lucky at the end of it that it had not arrived in the second pregnancy. Quite why, I don’t know. Who knows? It’s just so random, so.In the context of considering a second pregnancy, Betty was thinking about sorting out her will. She hoped though that her previous experience would mean she would be monitored closely.
In the context of considering a second pregnancy, Betty was thinking about sorting out her will. She hoped though that her previous experience would mean she would be monitored closely.
Yeah I was thinking about it this morning actually; I was thinking, 'Maybe I should get…like sort out my will' [laughs]. Isn't that a morbid thing to think about though? But I have to be quite pragmatic I guess because if it does happen I need to know…I need to sort out my life insurance; I need to sort out wills. But then I suppose that’s something you're supposed to do once you become a parent anyway.
I know my mum's very against me having a second one. I'm really just relying on the fact that if I've had it once before they’ll be more attentive the second time and I'll be more careful and more precautions will be taken into account when… if they suspect anything. I guess my concern is something new could happen; a year's elapsed; I'm already in the high risk age bracket. So, something unexpected could happen but then that would be the case with any pregnancy.
Most women who went on to have another pregnancy after pre-eclampsia or HELLP syndrome said they received extra support from doctors and midwives. This included extra monitoring and medical appointments. Sometimes it meant that appointments were at the hospital with a doctor, rather than or in addition to seeing community midwives and GPs. Emma saw a consultant in her second pregnancy at 16 weeks and then her local community midwife, who was “well-informed of my history” and very supportive. Philippa said “it was quite nice to know they were going to be looking after us a bit more [… and giving] medical attention right the way throughout”. Women who felt their concerns hadn’t been listened to in a previous pregnancy were sometimes cautious though. Paige felt that, although she could flag issues, she couldn’t force doctors to prescribe her medicines or look after her in hospital if problems did develop.
Some women did have high blood pressure problems again in following pregnancies and the monitoring helped pick up problems quickly. Other women didn’t develop blood pressure problems and so the extra monitoring could feel unnecessary. In her second pregnancy, Amy’s blood pressure stayed “perfectly normal. In fact, my midwife described me as utterly boring this time which I wasn’t offended by”. Janine recalled how “every week, blood pressure’s the same, urine’s negative, centimetres are the same for the weeks gone, and I thought ‘blinking typical’”.
Mairi had HELLP syndrome in her first pregnancy. She had extra monitoring in her second pregnancy, which was time-consuming but also reassuring.
Mairi had HELLP syndrome in her first pregnancy. She had extra monitoring in her second pregnancy, which was time-consuming but also reassuring.
They checked my bloods every time I went. So, instead of just maybe every four weeks or whatever, they were checked every time I went.
Urine was checked every time I went as well, and again that was much more than the first time because you maybe were only seen every four or six weeks; it was because I was going every fortnight they were checking everything every fortnight.
And how did you feel about this extra monitoring?
I knew it was for my own good but it drove me nuts. Because I was working and I had to ask for time off every fortnight, but I think that’s because I felt well myself, and I just know my body really well. So, like I knew I was ill and I went to the hospital, whereas I kept thinking, 'This is ridiculous…' and I remember saying to them, "This is ridiculous, I don’t even feel ill," but I think it gave Stephen peace of mind; definitely gave my mum and dad peace of mind. And I remember thinking, 'Mm, if this happens again with [second son’s name], or the second one, Alex might not have a mummy; actually I should…' It was… the stakes were raised because Alex was now here.
There were some other changes some women said they would make or had made in following pregnancies. This included requesting a planned caesarean section, transferring care to a different hospital than last time, and/or starting maternity leave earlier.
Emma’s doctor suggested she start taking aspirin when she became pregnant again.
Emma’s doctor suggested she start taking aspirin when she became pregnant again.
Yeh
How was that explained to you?
Again once she found out I was in research she; she explained that they felt Aspirin reduced pre-eclampsia reoccurrence by about ten percent or something she said I think. But and she actually gave me a few journals, you know she said you can read these and explained that they felt that again benefits outweighed any risks that are taken, and it's a very low amount so the risk was minimal, so yeh.
Yeah and were you concerned about taking the medications?
Not really so.Angela talked about some of the things she would want in place before trying to get pregnant again.
Angela talked about some of the things she would want in place before trying to get pregnant again.
I think to appease my… I know a lot of this is in my mind. So, I think I would need to be quite closely monitored which I have been told I would be classed as high risk; you come under the obstetrician which I don’t mind... you know I don’t mind either way but I know I would be closely monitored, but I have in my head that I would want to be booked in for a caesarean beforehand because I… even though, you know I'm so happy that she was delivered naturally, I can't risk the going out of control again.
It was all about this control element and I think it needs to be… I would need to be structured – regularly monitored and have a caesarean.
Women often said they were worried in next pregnancies. Janine’s friends tried to reassure her that it would probably be fine, but this was of limited impact. Other health complications—such as previous miscarriages, morning sickness and gestational diabetes—could add to their worries. But a few women said they felt less concerned in following pregnancies. For Philippa, “having done it [pregnancy and birth] before, I think you naturally don’t worry as much the second time”. Some women thought they were more prepared for a high blood pressure problem if it developed a second time. Paige said that, “now it’s happened once, I know what signs and symptoms to look out for; I know swelling that severe is not normal. If my blood pressure does keep going up then I won’t be just dismissing it”.
Vicki worried about high blood pressure problems developing in a following pregnancy.
Vicki worried about high blood pressure problems developing in a following pregnancy.
Yeah and I think the nearer I got to that kind of, you know, ten weeks before, 32 weeks, the nearer I got to when it started spiking before, you know, the more anxious that I got about it and, you know, every time you would sit and you would take your blood pressure, you’re always, I felt a bit like a ticking clock.
You know, like when it was going to go off again, kind of thing, although the consultant had said to me that if it happens in your first pregnancy, there’s only something like a 40 per cent chance of it happening in your second because your body is more used to it. So I had to try and, you know, remember that as well and I think, you know, my sister having really bad pre-eclampsia after my first son was born, I think that made the family more anxious as well, you know. I don’t think they really fully appreciated, you know, what could happen.Aileen had pre-eclampsia in both of her pregnancies. During her second pregnancy, she was in hospital and the decision was made she needed a caesarean section whilst her husband was at home looking after their young child.
Aileen had pre-eclampsia in both of her pregnancies. During her second pregnancy, she was in hospital and the decision was made she needed a caesarean section whilst her husband was at home looking after their young child.
No, because he wasn’t with me, he was at home caring for my daughter. It was actually quite a rush. They decided to section me at about 4am. Yeah, so I phoned him and he wasn’t answering his phone. I'm thinking, 'Why isn’t he answering; come on wake up,' and he was actually bottle feeding my daughter then so he couldn’t answer the phone. So I phoned my in-laws instead – "Can you go to our house."
Yeah. And it must have been very different while an inpatient in this…in the second pregnancy monitoring your blood pressure because you did have you responsibilities with your baby.
Yeah
How did you manage that?
It was very difficult because obviously childcare is an issue. My husband's working – we are lucky that he's self-employed; that he can manage his time easily, but if he was employed, that he has to work the set hours, but it was still difficult.
And we were lucky as well that my in-laws were nearby, that they can help out but obviously I couldn’t see my daughter; I wasn’t there. They come and visit me but very limited and I don’t want her to be in the hospital for a long time because I don’t want her to catch anything. So that was difficult.
For some women, a later pregnancy without problems helped re-build their confidence. As Hanna explained, “I gained so much from it […] I made the right choice to have a second baby”. Compared to her first birth of an emergency caesarean section under general anaesthetic, Tracey’s second pregnancy and birth was a much more positive experience: “you can hear what’s happening; there wasn’t the panic. It was quite nice to have him delivered and I could see him straight away”. Philippa had pre-eclampsia when pregnant with her first baby whereas the second was “a really easy pregnancy […] with absolutely no complications whatsoever”. For women who had previously had emergency caesarean sections, planned caesarean sections could feel quite ‘slow’. Some women were hopeful about future pregnancies and Melissa said she would “like to have a natural birth without being induced”.
Mairi had a caesarean section with her second baby, and this time it felt like it came too slowly. Mairi thought this difference the second time boiled down to the fact that “because nothing was going wrong, you just become one of the normal ones; you just have to hang on and they were extremely busy that day”. Having had caesarean sections both times wasn’t a worry for Mairi though: “I would never allow myself to get caught up in the whole, 'I haven’t done the proper female thing of having a proper birth.' […] I'm obviously not very good at giving birth, so that’s fine, I'm alright with that”.
Initially, Munirah didn’t think she could face another pregnancy. But seeing her stillborn son helped her realise that she and her husband wanted to try again for a baby.
Initially, Munirah didn’t think she could face another pregnancy. But seeing her stillborn son helped her realise that she and her husband wanted to try again for a baby.
Tracey didn’t want to have another pregnancy for several years. She was glad she had another baby in the end though, as it gave her the chance to experience pregnancy the way she thought many other women do.
Tracey didn’t want to have another pregnancy for several years. She was glad she had another baby in the end though, as it gave her the chance to experience pregnancy the way she thought many other women do.
Why's it so helpful?
It's just being a woman and that’s what… how you're supposed to be or how you think you're supposed to be. You know it's having that same experience that other people have had that you're made to listen to in baby groups and you want that; you want to sincerely say, "Yeah it was great," but I really can't. And you just feel cheated; I feel cheated.
And is it about experiencing a normal pregnancy, or the birth, or afterwards – which part of the journey…?
It's the whole thing, it's the whole thing. You know you want to be …you know you’ve made the decision to have a baby and it's probably the biggest decision of your life and you want it to be as it's supposed to be. It's supposed to be a joyous thing; you're supposed to, you know have a lovely feeling and blossom and, you know grow this child with everything you have. And when things don’t go right it's… that’s not meant to be. So, to have the opportunity to do it again was quite nice.
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