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Pre-eclampsia and high blood pressure in pregnancy

Diagnosis: feelings and impacts

Women we interviewed responded very differently to realising that they might have a high blood pressure problem. For some, the diagnosis came out of the blue. So suddenly being told there was a potentially serious problem with high blood pressure came as a huge shock. Some were “in denial” about the news at first, for others it took a while to “click in”. Dominie was told she had very high blood pressure 28/29 weeks into her pregnancy - “even as a midwife, I still didn’t register how severe it was”.
 

Tracey started to feel very unwell 29 weeks into her pregnancy. Everything happened quickly when she was diagnosed with pre-eclampsia and HELLP syndrome, and admitted to hospital.

Tracey started to feel very unwell 29 weeks into her pregnancy. Everything happened quickly when she was diagnosed with pre-eclampsia and HELLP syndrome, and admitted to hospital.

Age at interview: 39
Sex: Female
Age at diagnosis: 29
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Yeah and you just can't take it in; it just doesn’t… you know they could be talking about somebody else for all you know. You know you're looking in on yourself; it's a weird feeling because they pumped you full of some many drugs as it is and you're just not taking it in. It's so frightening because at one minute you're fine, next minute you're not; it happens so quick that you're just so unprepared for it; no leaflets, nothing in the … before all the… you know the classes that you go to – I didn’t even get to that point. But there was no information from midwives about pre-eclampsia.

It is a shock going from a day at work to then the next day just being… your life has completely changed; you are a mum and you're in hospital and the baby's unwell and might not make it from one hour to the next, and you just can't comprehend it; you can't get your head round that. It's mad. It's totally life changing actually.
Sometimes women needed treatment fast and there was little time to process what the diagnosis meant. Tracey was told she had HELLP syndrome just before she was given the general anaesthetic for an emergency caesarean section: “they said that was what it was and they had to get the baby out then, but it still didn’t mean anything to me”. Betty had pre-eclampsia and said it had been “very difficult to find out accurately, and in layman's terms, what happened” when her health deteriorated quickly, leading to an emergency caesarean section. Paige also had pre-eclampsia, “looking back on it now, you can see how scary it was but I think everything just happened so quickly I just didn’t have time to catch up with it all”. 

Some women said being diagnosed was a chaotic and confusing time. Sarah described mixed emotions about being diagnosed with pre-eclampsia and told her son would be prematurely born at 33 weeks. She wanted the pregnancy to end as soon as possible because she felt so unwell, but also “the motherly instinct kicked in immediately, and I was thinking ‘my God, it’s too early – he can’t come out, he won’t survive’.”

Feelings about the ‘seriousness’ of high blood pressure problems

Not every pregnant woman who has high blood pressure goes on to develop serious problems. Some people have quite ‘mild’ pre-eclampsia, with seemingly minimal impact on the rest of their pregnancy, the birth or the health of mother and/or baby. As Kay explained, “my sister had had pre-eclampsia at like 37 weeks, 36 weeks and, you know, they put her on blood pressure medication and they took the baby out – ta da”. This sometimes gave the impression that blood pressure problems were nothing to worry about. While this may be true in some cases, there is a wide range of severity with pre-eclampsia going from very mild to very severe. 

For those women we spoke to who didn’t realise that high blood pressure in pregnancy could be so serious, steps taken by their doctors or midwives (such as sending the pregnant woman to hospital) often seemed excessive.
 

Helen X had high blood pressure at a routine antenatal appointment. She wasn’t worried about it at first and her GP agreed to let her test it again a few hours later. She was admitted to hospital for more tests when her blood pressure remained high.

Helen X had high blood pressure at a routine antenatal appointment. She wasn’t worried about it at first and her GP agreed to let her test it again a few hours later. She was admitted to hospital for more tests when her blood pressure remained high.

Age at interview: 31
Sex: Female
Age at diagnosis: 31
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And I went for a routine 32 week GP appointment one morning, 8.30 in the morning and said, “Your blood pressure’s too high.” And I said, “Oh well, whatever.” Because I’ve had, I’ve never been regular at having my blood pressure taken because of something that happened back when I was at uni and so I always hate having my blood pressure taken. And so, I sort of brushed it off a bit, and said, to him, “You know, I’m sure it’s okay.” Or whatever. He was like, “I really want you to go into hospital.” And I was kind of like, “Oh that’s a bit extreme.” And he said, “Look, we’ll agree because you’re a physio, and I trust you. You can go to work, but I want you to take your blood pressure once an hour for the next three hours. I’m calling you at 12. If it’s still too high, we’re having this discussion again.” And I said, “Okay, that’s fine. Fair enough.” So I went off to work and I took it for the next three hours and it was still very, very high, so we agreed that I’d go to the hospital. Which I did, and went to just the day assessment unit, where they did more monitoring of it. It was basically, it was still high, but borderline as to whether they’d medicate or not. So I think they said, if it was over a 150 on a 100 they’d definitely put me on medication. If it was well below that they wouldn’t bother. Mine was sitting pretty well bang on that. So they didn’t know quite what to do. So they took some bloods as well and basically said to me, “Look, we don’t know quite what to do with you. Come back on Monday, and we’ll see how things are then. Unless we call you and tell you that your bloods are off, and then we might ask you to come back in.” So that was fine.
 

Kay went into hospital for checks on her blood pressure. She was told that she was very ill with pre-eclampsia, but she felt fine at that point.

Kay went into hospital for checks on her blood pressure. She was told that she was very ill with pre-eclampsia, but she felt fine at that point.

Age at interview: 42
Sex: Female
Age at diagnosis: 38
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Over the next three weeks, when I went back to hospital the next day they kept me in. And I said then, you know, "Why are you keeping me in now?" and they were like, "Well it's pre-eclampsia." I said, "But yesterday you said it wasn’t pre-eclampsia and you let me go home."

And they're like, "Well it's definitely pre-eclampsia and we think you should stay in hospital," which I wasn’t keen on, and the doctor said to my partner, "If that, if that was my wife I wouldn’t let her go home." So he made me stay. 

And at this point it was really surreal because I felt fine.

I just felt like I had a cold; I didn’t feel ill. So, they put me upstairs on a ward with four other girls and again I was feeling really hot and the midwives came round and they were like, "No, you're really ill." "Mm, well I don’t feel it." They're like, "Look you're the illest woman we've got in here." "Mm, don’t think so," because I did genuinely feel OK.
 

Although Michael knew his wife had high blood pressure in her pregnancy, he wasn’t too worried about this at first as the test results didn’t seem too serious.

Although Michael knew his wife had high blood pressure in her pregnancy, he wasn’t too worried about this at first as the test results didn’t seem too serious.

Age at interview: 32
Sex: Male
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What was your first inkling that something was sort of medically going wrong?

I feel a little bit bad, but it wasn’t probably until the morning that she was diagnosed and then we had the baby a few hours later, so like I said there were four or five days where she started to look really quite uncomfortable. I still feel I had it in the back of my mind that this is probably to be expected. So although she’d gone into hospital five days beforehand or four days beforehand and they’d sort of done a few things. And they noticed some high blood pressure and a few other anomalies, she was, I was still sort of thinking at the back of my mind, well that’s probably to be expected, that’s fine. And the day before we had our baby she was in hospital again, and I think it was you know, she had a couple of things like, well they noticed the high blood pressure again, and they were deciding whether to put her on medication for that and I think they noticed a few things like some traces of protein in her urine. And a few other details like that. But still none of it, I’m not very medical at all. But a lot of these types of things sort of sounded quite normal. You know, I don’t know about protein in the urine. But I’m sort of thinking oh okay traces of protein in the urine, high blood pressure, yes, okay. That seems not fine, but you know, that doesn’t sound like an emergency yet.
A suspicion something was wrong

Some women suspected something was wrong. They often felt frustrated their doctors and midwives hadn’t acted quickly enough or had been dismissive about symptoms and signs. For these women, getting a diagnosis came as a relief that their concerns were finally going to be taken seriously. Olivia was diagnosed with of pre-eclampsia at 37 weeks, when “[community midwives] finally caught up with what I’d known” since about 14 weeks. This experience left her feeling scared and angry; she joked, “you can see why people want home births in a field with a dolphin [for a] midwife nowadays because I was just so frustrated at medical professionals not listening to me”.
 

Betty had positive test results for proteinuria and the samples were sent away for more analysis. She heard back only the once and it was diagnosed as a urinary tract infection. Betty felt these were missed opportunities to flag the start of pre-eclampsia

Betty had positive test results for proteinuria and the samples were sent away for more analysis. She heard back only the once and it was diagnosed as a urinary tract infection. Betty felt these were missed opportunities to flag the start of pre-eclampsia

Age at interview: 38
Sex: Female
Age at diagnosis: 37
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And on five occasions they detected protein; they all said that they would… sent to a lab and let me know if there are any negative results, and nothing ever came back. Yes, so five occasions – only one party came back to me and that was my GP, and they told me it was a UTI and prescribed amoxicillin?
 
Yeah
 
And so that was what I took.
 
They admitted there was an error in the process and so we re-traced the… I did mention earlier on that there were five occasions when they'd discovered protein in my urine, so we were trying to work out when those five scenarios were. They were going through my notes and saying, "Oh, you know they should have picked this up, they should have picked this up," and I suspect it was because I was at that stage where I was going from the hospital to the GP; the GP was asking me to go to see the community midwives.
 
And the system isn’t connected – that’s something got lost in translation. I also asked them whether they could notify my GP that… it's likely that the problem arose because my GP diagnosed me incorrectly and thought I had a UTI.
 

Paige felt dismissed when she brought up symptoms to her midwives. She was relieved that “somebody was finally listening to me” when she was sent by her GP to hospital at 32 weeks.

Paige felt dismissed when she brought up symptoms to her midwives. She was relieved that “somebody was finally listening to me” when she was sent by her GP to hospital at 32 weeks.

Age at interview: 20
Sex: Female
Age at diagnosis: 19
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So I ring the hospital. She said, "I want you to see a GP first." She's like, "I don’t want to bring you up here if it's just nothing," she said, "but I want you to see your GP. If you can't see your GP I want you to ring me back and we will come and see you." So, I went to see my GP and he was amazing, like he went through everything. He just like right… he checked my blood pressure, asked how long I'd been having it and then just before he said, "Look, I'm sending you to hospital." He was like, "You were never having this baby full term." So obviously from my notes he knew I was having pre-eclampsia but I just unfortunately I wasn’t told about it.

Mm mm. And you described the contact as excellent. What made it so good?

It was just like… I think because he was... somebody was finally listening to me, rather than thinking it was all in my head, like, 'Oh no, you're fine, you're pregnant, you're doing lots.' So, he actually listened to what I had to say. He checked my blood pressure like three or four times and the last time he said, "I don’t want you to talk now, I just want you to relax, take your blood pressure." He was asking… was asking like if I'd felt the baby and was just generally… it just seemed like he was interested and he actually wanted to help rather than, "Oh no, you're fine, it's the pregnancy. Just go home, come back if it doesn’t improve," sort of thing.
Extra monitoring

One big impact of a diagnosis on everyday life was increased monitoring. This usually meant extra monitoring (by doctors and midwives and/or self-monitoring at home) which was reassuring for some, but time-consuming or frightening for others. Additional tests and check-ups included urine and blood tests, checks with a Doppler and ultrasound scans. While these could be reassuring if everything was well, there was also the worrying possibility of something serious being picked up.

Emotional responses following a diagnosis

A diagnosis of pre-eclampsia or HELLP syndrome often came as a shock. Aileen said she felt completely “unprepared” when she was admitted to hospital at 32 weeks. She had to cancel her plans for the next few weeks and arrange for maternity leave at work earlier than expected. Nicola remembered suddenly realising “oh my God, the nursery’s not ready”. Ruth X had an overnight stay in hospital to be monitored and, after being released, rushed to get “all my baby shopping” done in anticipation of being re-admitted for longer. Not many women said they were aware of the risks to their own health at the time. Samantha X said it was when her doctors started “talking about seizures and strokes, I thought ‘oh actually yes, this is quite serious’”.

For those women who became ill many weeks before their due dates, it could be particularly worrying to find out that their baby may be born prematurely (see also section on baby’s health soon after birth). As Josie explained, “my whole attention was that I was going to have a pre-term baby”.
 

Samantha X was admitted to hospital 29 weeks into her pregnancy when her tests came back showing high blood pressure and proteinuria. She was shocked to learn that she would need to stay in until her baby was born.

Samantha X was admitted to hospital 29 weeks into her pregnancy when her tests came back showing high blood pressure and proteinuria. She was shocked to learn that she would need to stay in until her baby was born.

Age at interview: 32
Sex: Female
Age at diagnosis: 31
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I thought I was going in for a check-up and actually I was all dressed to go to work and I, I kind of knew the routine by then, because I’d been in there a few times for check-ups so I knew they were going to check my blood pressure, I knew they were going to take blood. I knew they were going to ask for a urine sample. So we did all that and I sort of sat there, and I had my book, because I know that it takes a little while, and when the midwife checked my, my urine sample, and there was a, I think she said it was a plus 3 reading of protein which is like, I think is like the highest they check. I thought to myself then, okay this is bad. And she said to me, you know, “We’ll get the doctor to come and see you.” And one of the registrars saw me, looked at the blood pressure, looked at the blood results and the urine sample and she said, you know, “You’re got pre-eclampsia and we’re going to admit you.” And I think even then I just thought, oh I’ll just be in for a couple of days and I said to her, “Oh you know, how long am I going to be in for?” And she said, “Well basically until your baby’s born.” At which point I was, I was I like, I just sort of went oh okay and I don’t know, it just didn’t seem quite real. And I suppose it’s one of these things were you just kind of get on with things. So I thought okay, well I’d better ring my husband and let him know and then secondly, I’d better let work know, because I have quite, I have a job with quite a lot of responsibility, quite a lot of stress I manage a team, and there was a lot going on, that I needed to look, look after before I went on maternity leave. And I just thought, that was one of my first thoughts actually was, what are we going to do about work? And I rang my boss, and I could tell that she wasn’t very happy, but, and because there was, I suppose what was wrong with me, was slightly intangible. It’s not like, I could point to something and say, oh you know, I’ve got to stay in hospital, because I’ve got a broken leg or something like that. It was, you know, high blood pressure and pre-eclampsia and unless you know what it is, I suppose it doesn’t feel like something that’s very serious. And when they sort of said to me, “You know, you’re going to be in here for a long time.” I thought, I just thought, oh God that’s going to be awful. 
 

Munirah had a scan after being diagnosed with pre-eclampsia 25 weeks into her pregnancy. Sadly, this showed that her baby had suffered brain haemorrhages and she made the difficult decision was made to terminate the pregnancy.

Munirah had a scan after being diagnosed with pre-eclampsia 25 weeks into her pregnancy. Sadly, this showed that her baby had suffered brain haemorrhages and she made the difficult decision was made to terminate the pregnancy.

Age at interview: 27
Sex: Female
Age at diagnosis: 27
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Then at about 25 weeks, I started to get some pain, kind of just above my bump, and then it wouldn’t go and I thought it was probably something that I'd eaten, and then I actually called the hospital and they said, "Should probably come in and see us," and that was later in the evening. When I went in, they said, "You know your blood pressure's a bit high," and I said, "Yeah my mum had high blood pressure in her pregnancy too." And then… and I think it was a 140 over 90 at that point. And then another doctor came along and said, "It could just be a urine infection; the baby's growing, that’s why you're in pain; you should just go home and we'll check on you tomorrow" and that was on a Sunday night. So then I thought… didn’t actually think anything of it. They'd given me painkillers to get rid of the pain and that actually really did help. I was quite sick but they put it down to the fact that I'd been worrying and not-, I hadn’t eaten and things like that. So, we went home and they said, "Come back tomorrow and we'll check your-, check on your blood pressure." So I went-, I thought they had nothing to worry about. I went back in the next day, in the morning, thought I'd pop in and get my blood pressure checked before work. And I went in and one of the doctors… so I met so many people I can't remember who it was exactly, said, "Your blood pressure is still high." It was still 140 at this point. She said, "You're not going home, you have to be admitted into hospital." And I think then the fear kind of set in, like ‘oh my god, what's happening?’ because they didn’t expect it to escalate so quickly. And then I called my husband and he came straight from work, straight to the hospital, and met me there and he's… and they said, you know, "We suspect you may have pre-eclampsia," and then I said, "Yeah, my mum had that in her-, she-,my mum had it in her last pregnancy,” and that was about 21 years ago. And-, they said-, and I-, they said that if my blood pressure could be controlled that they'd keep me in hospital and they'd deliver the baby and everything would be OK. 
 

At 32 weeks into her pregnancy, Helen X agreed to stay in hospital overnight to check that medication to lower her blood pressure was working. It came as a shock when she was told the situation had become more serious and her baby would be born that day.

At 32 weeks into her pregnancy, Helen X agreed to stay in hospital overnight to check that medication to lower her blood pressure was working. It came as a shock when she was told the situation had become more serious and her baby would be born that day.

Age at interview: 31
Sex: Female
Age at diagnosis: 31
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And so anyway, eventually on Monday, they decided to put me on medication. And initially they said like, “We’ll put you on medication. We’ll just keep you in overnight, just to make sure the medication’s had an effect on your blood pressure. And then you can probably go home tomorrow morning.” And so anyway I said, “Fine.” So I spent my first night in hospital and I was actually quite happy, because they had the electric beds and I call pull my bed head upright and I was actually comfortable sleeping, and I was like this is great actually. I’m quite happy to be here [laughing]. And then the next morning was when it really kicked off like, so I’m sure it was about 7 in the morning. I just had this army of doctors come in and say, “You’re liver function is so far off, we have to delivery your baby today. It’s going to have to be by caesarean, because you’re too early for any of the drugs we’d give you to induce it to work. So basically you have to have a caesarean and your baby’s coming today, and that’s it.” So I was just [blerrr] [laughs] and then I wanted it, so obviously I’d been anticipating that someone would tell me my blood pressure was better and I could go home. And that’s what happened, and so obviously I just immediately called Michael and said, “Come here now, your baby’s coming today.” And then we just, the rest of that day, I think, we were just completely shell shocked. We just had a parade of, you know, anaesthetists, neonatal specialists, just every single specialist coming in and giving us information that I’m sure didn’t sink it at the time at all, and we just, you know, we were flabbergasted by all these people coming in and out and everything that was going on and all of the rest of it, and its really funny actually. I look at, we have photos from that day, and like one of the anaesthetists came in and he, Michael was all dressed up in the blues to go into surgery, and like there’s this photo of us and we’re both smiling about this day, and I just look back at it now and think ‘how were we smiling?’ [Laughs]. And we’re just, I think we were just shell shocked. We just had no idea of what had hit us, you know, it was so far from what we’d anticipated for the birth of our child. It was just bizarre.
A high blood pressure problem in pregnancy could also affect the kind of birth a woman was likely to have, and some women were disappointed to realise it was more likely that they would have a caesarean section. You can read more about the women’s experiences of labour and birth here.

What did the diagnosis mean? Uncertainty about diagnostic labels

Some women had not been given a clear-cut diagnosis and there was often confusion about the differences between terms used. Sometimes women had been told they had one thing (e.g. high blood pressure) but their medical treatment or notes said another or gave more details (e.g. pre-eclampsia). Lyndsey thought the term ‘pre-eclampsia’ wasn’t used whilst she was being monitored because she hadn’t yet developed it and/or because doctors and midwives don’t want to “worry you if it’s not going to develop into that”. Paige thought her doctors were reluctant to diagnose her with pre-eclampsia because she was “a young mum”. Some women said their doctors and midwives were open about the uncertainty around diagnosis, as a person might “tick some boxes” but not others. Julie and Helen X both remember times when they were told they had “borderline” pre-eclampsia.
 

There was uncertainty about Claire’s diagnosis when she was unwell. She found that eventually getting a diagnosis label was a way to emotionally move on.

There was uncertainty about Claire’s diagnosis when she was unwell. She found that eventually getting a diagnosis label was a way to emotionally move on.

Age at interview: 39
Sex: Female
Age at diagnosis: 39
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Do you know what they did tell me, they did tell me that when it came to making a diagnosis I would tick some boxes, but then I would tick some boxes for a different condition, and again we've been told subsequently that I had three or four things going on, but didn’t have full, not full blown, everything was full blown, but I didn’t have every single symptom for one condition, they all kind of ended up interlinked kind of, which I guess confused… not confused them but they just didn’t want to make that firm diagnosis because they would be missing something out.

And how did you feel about that uncertainty?

It was scary. It was… it made you think, 'Can you just tell me.' I think for me the biggest thing is they made the decision to induce me, so I always knew from the Sunday that they were looking at me having my daughter that period. 

The final diagnosis was severe pre-eclampsia, so I guess they're kind of hedging their bets a little bit. Diagnosis for me – yeah I think having that label does allow you to process it more because the 'what ifs' are unimaginable.

And I think if you have a label you're able to kind of draw that line and you can box it and say, "This is what it was; it's done, let's move on."
 

Dr Khan says there is often confusion about the different labels used when talking about pre-eclampsia or other blood pressure disorders in pregnancy. This is sometimes because the condition progressed over time.

Dr Khan says there is often confusion about the different labels used when talking about pre-eclampsia or other blood pressure disorders in pregnancy. This is sometimes because the condition progressed over time.

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It can be confusing for women to understand what’s going wrong when different doctors and midwives are using different words. Examples of these words might be hypertension in pregnancy, pre-eclampsia or HELLP syndrome and one of the reasons that sometimes midwives and doctors seem to cross over with these words is because the conditions themselves cross over to a greater or lesser degree. For example, HELLP syndrome, which is a condition where you might have damage to red blood cells, changes in how the liver works and changes in certain cells in the blood or platelets, very often, if not almost always, is associated with high blood pressure. So many doctors and midwives feel that HELLP syndrome is actually a subset of pre-eclampsia. Hypertension in pregnancy, on the other hand, is usually a phrase used to describe just high blood pressure in pregnancy, which can be contrasted against pre-eclampsia, which most people understand as a mixture of high blood pressure, protein in the urine and swelling. In truth, for an individual patient, she might be given a variety of these different phrases or terms at different times but it’s important for that patient to question the doctor, if she doesn’t understand exactly what’s going on.
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