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Pre-eclampsia and high blood pressure in pregnancy

Information about pre-eclampsia

Information about the condition (whether pre-eclampsia or HELLP syndrome) and their own health was important to women and their partners as they went through pregnancy. But they had different experiences of being given information or finding information and different views on the preferred content, quantity, timing and sources. Without adequate information, women could feel very confused and alone. Tracey never received an explanation of what pre-eclampsia was and she found not knowing what was happening very troubling, especially when she didn’t feel ‘right’ physically or emotionally. This left her needing more support at a later date because of the lasting emotional impacts.

Women sometimes struggled to understand and make sense of information they were given about their condition. In some cases, they felt health professionals had not communicated it clearly. During the illness, women were often in shock and overwhelmed. This made information difficult to process and sometimes women were hazy because they were on strong medications or in-and-out of consciousness. Sometimes it took a while for information to sink in. Kay struggled to accept what her doctors said to her, even when they repeated it.
 

Mairi thought getting the amount of information right was tricky and depended on whether the person was a “worrier” or not.

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Age at interview: 36
Sex: Female
Age at diagnosis: 30
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I think it comes down to your personality. I wanted to know lots of information because then I could deal with it myself. But I think if you're a real worrier, the more information you're going to have, sometimes it's not going to be helpful. Like if I realise that this HELLP syndrome was a continuum; pre-eclampsia was here and kind of HELLP, death is here. I don’t know if you're a worrying type of person, whether that information's going to help you because that… you’ve got no control over that at the time. So, actually reflecting back on it, probably the fact that they didn’t give us too much information… because it's… my understanding of it is it's not cut and dried that this happens and then this… and then this it can jump from here to here. So, I think it's probably really hard for the health professional to be… I had never heard of it so I think that in itself was a bit of a shock when she said to me. Had she said to me I had pre-eclampsia at the time when I'd gone into hospital, I probably would have been like, 'Oh I know what that is, that’s fine.' But the fact that she said I had HELLP it was like, 'Wow, I've never heard of that before.' 

I think maybe being aware that there are other things out there that can happen to you, but I know lots of my friends would have worried that they were going to get that, and actually were never anywhere near having it, so I think there's a very fine balance of having enough information when it happens to you, or being given enough direction to where you can get the information – that would be beneficial. But to worry you needlessly beforehand I think would be silly.
 

Looking back on having pre-eclampsia in her first pregnancy, Janine thought being young made it difficult for her to grasp what her doctors were saying. She contrasted this with how she seeks out information now that she’s older.

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Age at interview: 33
Sex: Female
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It’s like over a decade ago, and I suppose technology and treatment is so much more advanced now, as to what it was then, that, you know, there was obviously having routine urine tests but obviously there was the protein that had showed up, and then it had obviously progressed to protein plus two, and the blood pressure didn’t go mad until I was already admitted to [Hospital]. 

But I suppose sort of, being like nineteen, they could have told me things ‘til they were blue in the face and I still wouldn’t… it’s gobbledegook language to me, whereas now, being this much older, you can sort of understand it a lot more because you know, you’ve sort of been there and sort of put more, more documentaries and advice. It’s just a lot more advice these days, a lot more information given. Because I sort of, remember saying to my mum “what happened, what were they saying”.
The kinds of information women wanted

Women often had quite limited knowledge about pre-eclampsia before they developed it themselves. Samantha X “hadn’t really given it much thought”. Although a few people had come across information about pre-eclampsia, they hadn’t thought it would be relevant.

Women and their partners wanted information on a wide variety of topics: about pre-eclampsia symptoms; birth e.g. vaginal deliveries, caesarean sections including emergency caesarean sections); breastfeeding and bonding; long-term health impacts for the mother and/or the baby; and future pregnancies.
 

After having HELLP syndrome, Kate was given more information about the condition. She didn’t relate what she was experiencing at the time to the symptoms though.

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Age at interview: 35
Sex: Female
Age at diagnosis: 34
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How have you found out about HELLP syndrome?

Well I was actually given some information. I think it was by the GP, because its linked, well possibly linked to pre-eclampsia. But it was rapid onset. But reading the facts and figures its quite scary how little is actually known about it. And how fast it can actually occur with, well virtually no warning signs at all. I know that some people have visual disturbances and headaches. But thinking back on it, I had one episode of the visual disturbance. It must have been, well, only a few weeks prior to giving birth. I remember walking along, and then there was one line of vision here. I thought oh this must something in my eye, because I couldn’t quite see. I couldn’t see my hand to the left of me, and I thought that’s odd. That’s a bit weird. Didn’t really think anything of it. I thought well I’m obviously tired because I’m not sleeping very well. And then within about an hour it had gone away. I didn’t mention it to anybody because it didn’t mean anything to me. But possibly that was part of it. And also what I’d put down to indigestion was actually epigastric pain [laughs]. But when people say, “Oh yes, indigestion so painful.” You think, wow that was painful. But you don’t know what pain means to people. 
A few women we spoke to had medical backgrounds. Dominie was a midwife and Aileen a neonatal nurse; both felt that it was sometimes assumed by their doctors and midwives that they already knew what was going on, and so they weren’t given as much information or advice. Emma was a scientist and felt comfortable looking up studies about side-effects of medicines in medical journals.

How much information and when?

Some wanted a lot of information, others felt the ‘the basics’ were enough. Stephen explained: “effectively the only piece of information I needed there was the reason why you are being ill is because the baby's inside you” and that the doctors would help ‘fix’ it. Some, like Josie, wanted lots of information but others felt they had too much to take in. Others said they didn’t have enough and that gaps or partial information could be a problem. When Lyndsey was told that her baby would be coming home from SCBU (Special Care Baby Unit) “soon”, she wanted more details to manage her expectations.
 

Betty didn’t know for a long time whether her son was likely to survive or not. Living with this uncertainty was hard.

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Age at interview: 38
Sex: Female
Age at diagnosis: 37
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Because even then we didn’t know whether he would actually make it. I guess that would have been good in hindsight if someone could tell us what the chances of survival were.

All we heard I think was the fact that he was born at 32 weeks and so therefore he has a… the chances are good, but you don’t know what that means. And so I know my husband found it really hard to bond because, a) well they look like little aliens because they're so small and they don’t look like human beings in the traditional sense. They don’t look like babies, they look like little aliens and he was very scared to see him. And you know part of you is always thinking, 'Oh, well we don’t want to get too attached because he might not make it.' And maybe the chances were 95% but we didn’t know this, so maybe that’s something to consider.

Mm mm. And do you think percentages would have been useful for you or how would…?

Yeah definitely

Yeah

Because genuinely we had no idea whether he was going to make it or not. I'm sure the nurses knew but… and also, now in hindsight, I know that if it was more serious he wouldn’t have even been in special baby care, he would have been in neonatal intensive.

Yeah, yeah 

So, I guess the whole journey is an education in itself, and now looking back I've realised he was fortunate enough to have been born at 32 weeks and actually he was fine, but I didn’t know that at the time.
There were occasions when information was particularly important such as; receiving a diagnosis, admission to hospital, during labour, shortly after birth and when mothers and/or babies were discharged. Information at these times could help women understand what was going on and prepare for the next steps. Emma’s GP had forewarned her that she would probably stay in hospital until after her baby was born, giving her a chance to pack a bag to take in. When Munirah was discharged after her son was stillborn, she was given a summary sheet with key details such as the medicines she had been on and a number to call if she had any health concerns.

However, there were also examples when women had needed more information at the right time. Lyndsey wasn’t told that her baby might need to go to SCBU after the caesarean section. So she expected him to be with her when she returned from theatre and it was upsetting when he wasn’t there. When Paige was discharged, she wasn’t told about the symptoms to keep a look out for or given a leaflet. She had high blood pressure and her symptoms returned a few days later; it was only because a close family friend had warned her about this that she knew to seek help right away. Other aspects of information were also missed out: “they didn’t even give me a leaflet on c-sections; they were like-, I only know from other people in my family having c-sections that you're not allowed to drive for eight weeks”.

Some people were glad they hadn’t known more about their condition at the time. Emma thought it was for the best that she hadn’t known there was an increased risk of stillbirth until after her baby was born. Stewart thought there were some things that health professionals might withhold from women in case the stress made them worse, but he felt that “possibly the partner should be taken away and informed on a just one-to-one sort of thing… and possibly what we should be looking for [e.g. symptoms]”.

Information from health professionals

Health professionals were the main source of information. Some said their doctors, midwives and nurses were good at explaining the situation and updating them on any changes. Samantha X always knew what was happening and didn’t have to chase anyone. Many people said the medical teams performing caesarean sections were good at communicating about the procedure. Some women and partners found it helpful to meet with paediatricians before their babies were born. Claire explained, “For me, that was really important because as their mum you want to know what's going to happen”.
 

Knowing that an emergency caesarean section was very likely, Samantha X and her husband had the chance to talk with a paediatrician beforehand. She found this really helpful for explaining how her baby was going to be looked after when born.

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Age at interview: 32
Sex: Female
Age at diagnosis: 31
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They were very good actually. They, they told us about, you know, obviously they can’t speak in specifics until a baby’s born, but they, they gave us information about a baby born at 29 weeks gestation, you know, the main concern that we have is for the lungs. I’d had steroids already to already to address, you know, to certainly try and address that issue. They explained to us about some of the likely medication and machinery that, that you’d probably have to go on and you know, how they would sort of deal, deal with the baby in theatre and then take her away and that sort of thing. So, and actually that was really good, because when, I didn’t see her for quite a while, because they wouldn’t let me off of the delivery suite. But when my husband went upstairs and they were using terms like, ‘oh this is the CPAP machine’, he knew what that was and why they were using it. He already knew that and although it was still a big shock for him to see, you know, our daughter in that sort of situation, he did understand what everything was, and why it was there. So I’m really glad that we had someone come and speak to us actually, because, I would, I think otherwise I would have just been completely freaked out and you know, what’s going on, sort of thing. But because they’d talked to us about what you know, a baby at 29 weeks gestations is generally what their condition generally is, it wasn’t such a shock.
However, others were disappointed that the health professionals they had seen were not very forthcoming with information. Hanna said the doctors didn’t tell her husband what was happening when she was very ill or answer his questions. Aileen thought it was also important that health professionals explain things sensitively to avoid unnecessarily frightening women and their partners. Janine thought her doctors tried to keep the seriousness of her health “under wraps” but remembered her mum trying not to show how worried she was.
 

Tracey wasn’t told how serious the situation was. Instead, she picked up other clues such as panicked looks and the fast pace everything happened.

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Age at interview: 39
Sex: Female
Age at diagnosis: 29
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You know that is all very well them knowing exactly what they're going to do but you know they don’t necessarily have the time to explain what's going to happen to you because, you know that they are doing the job that they need to do and we're not surgeons and none of us are medically trained and you really, you know put yourselves in their hands and it's all very well you knowing what you're doing but you need to explain to me what you're doing to me. So, making sure that I understand.

It was the rate that it happened and that’s how you knew that you were in trouble as it all happened so fast and, you know it's the glanced look from the nurse to the surgeon, and you know that something's not quite right. So, you're reading between the lines and you're trying to be brave and…

And is it scary when it feels like the healthcare professionals looking after you are panicking?

Yeah, yeah it is. You want to know the truth otherwise you're left not knowing and guessing and that’s the worst thing.
 

Hanna wished her doctors and midwives had been better at keeping her informed. She didn’t think information about her situation was shared between the doctors, which meant she had to keep repeating her story.

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Age at interview: 39
Sex: Female
Age at diagnosis: 37
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I think they could have explained to me what was happening. The problem was, I felt they weren’t forthcoming with what was wrong and they weren’t, they didn’t, they might have diagnosed what was the problem, but they never told me. It was my body. It was happening to me. I should have known. They should have advised me of what was happening to me but they didn’t tell me and I felt the communication was lacking, with I felt they were a bit indifferent as well from their attitude. It was their attitude that troubled me the most. It was not the fact that they didn’t tell me, it was the attitude, very dismissive, very indifferent, “Oh we’ve seen it all before.” But I hadn’t seen it all before. Surely we are individuals. We are not, I felt like I was, it was like a conveyor belt.

What could they have done differently? 

A bit more, empathy is missing I think. That’s missing. There’s no empathy and there’s no frankness. I’d rather someone be frank with me as to what is happening and honest, that was missing. I felt like they weren’t being honest because if they were, they would tell you exactly what was happening. And you could decide. Other things they could have changed was allowing you to take part in the decisions. Answer the questions you ask and see the same doctor. You see a different doctor every morning, thinking, and who are you? And it got to the point where I had to repeat the same message that I told them yesterday, to the new one, to the new one, to the new one, you feel like you are repeating yourself, when they should have known how long, how many weeks that I was there. Is she, everybody should be singing from the same book and the same hymn sheet, you know. When you tell them, “Well, It should be surely in the notes.” “Oh, it’s not here but could you tell me anyway. I wasn’t here yesterday. So forget about that doctor, you tell me now.” “And who are you?” “I’m the new registrar.” Well, I don’t feel inclined to actually repeat myself again and someone who’s very, very I’m into detail. I was really disappointed I can see where the errors happen because a lot of the medical notes were missing, well nobody bothered to put the notes in or write it down and I found that really frustrating because I kept watch. 
Some women had meetings with doctors at a later date to discuss what had happened and get more information. Claire asked for a meeting to review her case and answer some questions: “Could I have been diagnosed sooner? Could my baby have been born later because of this [earlier diagnosis]?”

Other women were not offered follow-up meetings, although many said they would have liked one. Tracey was sent a letter saying how well her baby was doing “but no-one ever really asked how I was, how I was coping”. Betty recommended that it be “a mandatory part of the process” to offer women who have had pre-eclampsia a debrief meeting with a health professional. 

Information from websites, leaflets and books

In addition to information from doctors, many people went online or looked in books. Julie looked in some pregnancy books when she didn’t feel well before getting in touch with the hospital. Samantha X thought looking online “seems just to be the easiest way to get hold of information”. Josie used both once she had been discharged home. She also had leaflets given to her when she left hospital and she later requested her medical notes, which made her realise in retrospect how dangerous the situation had been. Julie said her online research was “like therapy” – it reassured her that she didn’t develop pre-eclampsia because of anything she had done ‘wrong’.

Some people had concerns about the reliability of online information. Kay said she would only use “proper medical websites; I never use forums because that could be anybody’s opinion”. Some said looking online or reading about pre-eclampsia made them more worried and upset. Angela referred to “the dreaded looking through Google” as “panicking, worrying” her. Stewart thought “it would be better and more helpful if it [information] came from the hospital”.
 

Kay’s baby daughter had chronic lung disease. The nurses helped explain what this meant and that her baby might be on oxygen when she left the hospital. Kay also had a book about premature babies, but there were some chapters she avoided.

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Age at interview: 42
Sex: Female
Age at diagnosis: 38
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I didn’t know what chronic lung disease was. At all. I didn’t even know my daughter had it. It came about in conversation because she'd had the infection and we weren't allowed her out for a cuddle, and I was very stressed, and her paediatrician consultant said to me, "Well it's just, you know we've got to take extra care because she's got chronic lung disease."

And I never said anything, and I come out and I said to her dad, "What's that?" And we'd been given a book, like a bible on having our prem baby. And it had all…it was from Bliss and it had all these conditions in it now. See I can't read that book. I don’t want to know, 'Oh my goodness this could happen.' I can't… I couldn’t deal with that. But when I found out what she had I went to that section of the book but I couldn’t read cerebral palsy. Well no I don’t want to know any of that.

I was never… I mean I didn’t sleep anyway but it would have been worse had I all that going through my head. And so I read about chronic lung disease and then I asked the nurse; I spoke to the nurse about it. I think nurses are more approachable maybe than consultants, and she certainly was. She watched Imogen most days when she worked so I asked her and she explained things to me very good. Because, you know when the consultant said you know, "She's got chronic lung disease and you may be… we're going to have to start thinking about preparing for her going on oxygen."

How are we doing that then? So, it was good that that was all… you know the nurse explained to me what all these things were going to be because I had no idea what that was. 
 

Olivia was selective about which websites she looked at for information on pre-eclampsia.

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Age at interview: 32
Sex: Female
Age at diagnosis: 28
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Were there any particular websites or forums that you felt were particularly informative or useful for pre-eclampsia?

For pre-eclampsia, it was just general Wikipedia; actually I think Wikipedia was the only one I looked at because I was very careful because I knew that I had it. There's a lot of things that can scare you on the internet about pregnancy, about birth, so I was very careful to limit what I read and I only stayed with factual sites, so that was Wikipedia, Net Doctors, I think there's another, Boots, the NHS website.

You know I read those. I thought that will be hopefully a fairly balanced view of pre-eclampsia so I tried to stay with the very factual. But then obviously I'm reading experiences on… I was on the What to Expect Pregnancy forum which was full of crazy Americans, utterly packed with them talking about their experiences and they're always very extreme in what they were saying, so that worried me quite a lot because they were saying well quite scary things actually about their experiences and yeah. So yeah it was mostly through Google but I tried to keep it factual because I was aware, otherwise I could go off the deep end and start reading natural news and that would be it you know, so I tried… trying to keep it sane, it's very difficult though.
 

Mairi looked online about HELLP syndrome after being discharged home. It was quite frightening and made her realise how serious the situation had been.

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Age at interview: 36
Sex: Female
Age at diagnosis: 30
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Did you look anywhere else for that information?

Good old Dr Google. But it's quite a scary place when you go on it. If you type ‘HELLP [syndrome]’ in there, there's some horrendous things come up.

Mm mm. And why are they horrendous?

I think because you then realise that actually… the final point was I could have died. But at no point had that ever been explained – probably wouldn’t have been very useful at the time anyway, but I don’t think I ever realised how ill I was. And I remember we were speaking to my mum and dad and was going like, "Yeah, all's fine; yeah I have to stay in; my blood pressure's a bit high," and never at any point did we realise how ill I was. And then when I… I remember Googling and I got quite a shock when I Googled what are the possibilities, and how quickly it could change from one to the other. And probably very… the good thing was at no point was I ever aware of that in the hospital. 

It was all really just dead easy going and, which I suppose it was helpful at the time, but then I wanted to know when I came out what was this thing I'd had.

Mm mm. And was it mainly forums or did you find any high quality information about…?

No, it was just… I think I just typed it in, saw what was there, kind of read a few things and then I thought, 'I don’t think I want to know any more about this.' My mum had also done it and my mum had got quite upset actually, because she had Googled it when I told her what it was I had. And she…I remember her saying to me, "Do you realise how ill you were; you could have died from that," and I'm thinking, 'God what have you been reading?' and then I did have a look online and I thought, 'This isn't going to be helpful.'
Unanswered and unanswerable questions

Some questions had never been answered for women. Julie wanted clarity on questions like: “What was pre-eclampsia? Why have I had it? What’s it to do with? …Why did they give me this drug? Why did I have to have a caesarean? …I want to put the picture together so I can work forward from it”. She also had a lot of ‘what if…?’ worries. Claire said she had some questions about what happened, partly because she felt too unwell to ask them at the time when things were happening.

Several women felt that some questions weren’t answerable with the current knowledge about pre-eclampsia and its causes. Claire thought it was good that her doctors understood the limits of their knowledge and sought advice from colleagues and medical journals.
 

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.

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Age at interview: 38
Sex: Female
Age at diagnosis: 37
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I still find it quite a difficult concept to explain. I mean the websites do explain it but I can't tell which ones cause and effect. It could just be my lack of understanding and it's obvious to everyone else, but if someone asked me to explain what pre-eclampsia is I still don’t really fully understand it to explain properly. Some… I've heard from nurses that if you’ve already had it you're less likely to have it again. She… the consultant explained that there's a thirty percent chance of getting it again. And so, as with everything that I've discovered when it comes to medical matters, or babies generally, there's a lot of contradicting information out there.

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.
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