Women we interviewed realised they had a problem in different ways and at different stages in their pregnancies. For some, there had been a slow-growing awareness; for others, the news came out of the blue. Some experienced very clear symptoms, whilst others had only mild symptoms or none at all. Mairi was diagnosed with pre-eclampsia (and then HELLP syndrome) at 38 weeks and wasn’t sure when her blood pressure problems had developed.
Dominie was a midwife and her colleagues checked her blood pressure at work when she felt “funny”. She was sent home but started to feel unwell after visiting family. High blood pressure was picked up during a 32 week antenatal appointment.
Dominie was a midwife and her colleagues checked her blood pressure at work when she felt “funny”. She was sent home but started to feel unwell after visiting family. High blood pressure was picked up during a 32 week antenatal appointment.
Age at interview: 25
Sex: Female
Age at diagnosis: 24
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I think from about, maybe about 28, 30 weeks that’s when I started to develop pre-eclampsia. I had an episode where I was doing a night shift and I felt really funny. So they took my blood pressure and it was very high, and this was at work. But they couldn’t find anything wrong and they weren't that worried with my bloods and my urine and everything, so I literally just had a high blood pressure, so they sent me home. So I came home; I had a couple of weeks off.
So, I went off to Paris because my brother lives in Paris, and I spent a few days there. I felt awful the whole time I was there; just thought it was being pregnant. Felt really groggy, really just like really tired and weeing loads, drinking loads. And then when I came back, the day after I came back I hadn’t even unpacked because I felt so awful that I couldn’t.
It was the following day that I just had a routine consultant appointment.
So, I went and I saw my consultant. I actually… my husband didn’t come with me that time because I didn’t think that anything was going to be untoward, but my mother-in-law came with me because I was going to have a scan. So, they did a little scan of him and it was then obviously that they did three lots of blood pressures and my blood pressure was very high.
Olivia knew her blood pressure was rising during her pregnancy. She felt frustrated that while the readings weren’t ‘normal’ for her, they weren’t acted on by her doctors until they hit a “magic number”.
Olivia knew her blood pressure was rising during her pregnancy. She felt frustrated that while the readings weren’t ‘normal’ for her, they weren’t acted on by her doctors until they hit a “magic number”.
Age at interview: 32
Sex: Female
Age at diagnosis: 28
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Because I've always had very consistent blood pressure – a 110 over 70 – which is what it is probably right now – a 110 over 70 always. So, when it started creeping up I'd had my 12 week scan; it was higher than that at my 12 week scan. I think it was around about a 150, 180 over something, and over whatever it was. And I was like, "Oh, that’s unusual," and they said, "Oh it's normal for your blood pressure to go up." I was like, "OK." And then it just kept creeping; it kept creeping up. When I went at 14 weeks the doctor, I think at that point, it was a 120 you know, so I was like, "Ooh it's gone up again," you know two weeks later it had gone up again.
I'd be there with the band on my arm, the numbers going up – "Oh yeah that’s higher than the last time isn't it," checking your notes. "Oh yeah it is, yeah you're still fine though, it's all normal." And you go, "It's not normal for me," and that was the thing that I kept repeating, "It's not normal for me."
Dr Khan describes when women tend to get pre-eclampsia.
Dr Khan describes when women tend to get pre-eclampsia.
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Most women who are affected by high blood pressure are affected during the latter stages of the pregnancy. The majority of women are therefore affected in what we call the third trimester, which is the last one third of the pregnancy, and sometimes for the first to few days to weeks after they give birth to their child. In a minority of patients, they might be affected earlier but in a lot of these patients it turns out that, actually, they’ve had a blood pressure problem possibly from even before the pregnancy’s beginning.
There is a risk of pre-eclampsia after a woman gives birth. Although many women develop evidence of pre-eclampsia before they give birth, in some women pre-eclampsia only comes to light after the delivery but pre-eclampsia remains a condition of pregnancy and soon afterwards. It isn’t a permanent condition and it’s always the case that pre-eclampsia will get better if enough time is given. However, some women continue to need monitoring and treatment for a number of weeks after the birth of their baby.
Routes to discovering pre-eclampsia
Of the women we spoke to, many had found out they had raised blood pressure and/or protein in the urine at a routine medical appointment. Some women had pre-existing risk factors so were receiving extra appointments and problems were picked up with monitoring.
For some, their blood pressure had been gradually rising at each appointment. If a blood pressure reading was just ‘slightly raised’ or ‘a bit high’, it wasn’t usually a cause for alarm and the doctor or midwife might suggest the approach of just “keeping a close eye” on it. Women were either invited back to re-check their blood pressure or, in other cases, no further action was needed right away and the situation was re-assessed at the next routine appointment. The women who were taking part in the BuMP research study were asked to self-monitor their blood pressure at home.
If a woman’s blood pressure readings were high enough to be of concern to doctors and midwives, then she might be sent into hospital to be monitored more closely or sent home with a 24 hour monitor. Lyndsey had a high blood pressure reading at a routine midwife appointment at 7 months (33 weeks) and she was sent to the hospital for further checks. All seemed to be okay and so she was asked to come back every few days for the next two weeks for ongoing checks. Samantha Y was admitted to hospital several times during her pregnancy – pre-eclampsia was suspected but never confirmed one way or the other. She was shocked by the midwife’s reaction to her blood pressure reading and “didn’t really understand what was going on at first”.
Some women we spoke to had gone in to hospital and stayed in for a night or more; depending on the results of the monitoring, they were then either allowed home the next day or kept in for longer. Helen Y and Aileen had been given 24 hour monitors to wear at home when it was thought a blood pressure problem might be developing. They wore these monitors over a 24 hour period (including during the night) and then took the equipment back to the hospital so the readings could be checked.
Hanna was sent to hospital after a routine check showed high blood pressure.
Hanna was sent to hospital after a routine check showed high blood pressure.
Age at interview: 39
Sex: Female
Age at diagnosis: 37
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She sent me from the, her department to another department so as I was walking to the other department, I called my mum and I said, “I’ll be home late I think.” So, “I’ll call you back when I’m out.” So I waited. I went to the other department. They sat me down in the reception area. They had my notes already and they said, “The doctor will come and see you.” And I thought, that’s weird to be seen a doctor. Normally, it’s the midwives you see and then as I was just sitting there reading a paper I remember my name was called, so I looked up and there was two doctors standing over me in the reception, small reception area and one was in his, I would say, in his late 50s, early 60s and one was a very young chap and they said, “Can you come with us?” So they took me to a cubicle and they strapped monitors on and they said, “How do you feel?” And I said, “I feel fine.” They looked at my feet and they said, again the midwife came in to the little cubicle and she took the blood pressure again and they said, “We’re not happy with your blood pressure so we’d like to keep you in for observation.” And I said to him, “For how long?” And he said, “We don’t know at this stage because we’ve taken your blood pressure, at many different intervals throughout, for over an hour when I was with the midwife in the other building so and it doesn’t seem to have come down in your resting position and you haven’t done anything strenuous in the last two hours so, therefore, we cant understand, we have also seen protein in your urine so we’d like to keep monitoring you.” And I said, “Fine.” So I, even then, I wasn’t panicking too much because I was thinking, they’ll do a check on me and then they’re going to let me go home tomorrow. I’ll be able to go home and just have a normal baby delivery on my due date.
Amy found out that she had high blood pressure at a routine antenatal appointment.
Amy found out that she had high blood pressure at a routine antenatal appointment.
Age at interview: 34
Sex: Female
Age at diagnosis: 31
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So everything was absolutely fine for the first trimester. So usual kind of thing, you know, chucking up and feeling really tired and all the lovely things that come with it and looking great. And then the second trimester, I was still quite tired but started to pick up. The sickness, unfortunately, didn’t go until quite late on in the second trimester and then, when the sickness went, it seemed to be replaced by high blood pressure. I’m sure the two weren’t linked but that just seemed to be what happened and went for a routine appointment at the hospital because I was consultant-led and they did my blood pressure and it was elevated but I didn’t have any other symptoms you know, is it protein in the urine, I think, and things like that. So I think I saw one nurse and then I saw a lot of doctors after that because it had gone quite, quite high. It hadn’t-, it hadn’t been particularly low throughout the period when it should have been lower but it suddenly went up to the kind of the 150 over 100 and something kind of mark. So they were a bit worried about it. I think, honestly, I made it worse because I hate having my blood pressure taken so the more they did it, the worse it got.
Women who had a ‘very high’ reading at a routine appointment and who were experiencing other symptoms (such as headaches, swelling, visual disturbances and/or protein in their urine) were usually admitted to hospital immediately and most stayed for some time. Paige knew the situation was serious when she saw her GP at 32 weeks about headaches and he arranged for her to go to hospital by ambulance. She remembered her doctor saying “you need to get there now”.
Some women had symptoms (such as swelling and headaches) which prompted them to see a doctor or midwife who ran tests which identified a high blood pressure problem. Symptoms can develop quite slowly or, other times, quite suddenly.
Sometimes women had been unsure who to contact if they were worried. Munirah had been given a list of phone numbers of hospital clinics, including the maternity triage, but it wasn’t clear who to contact for particular queries. Kate and Tracey had both called the NHS medical helpline when they felt unwell, and were advised to call the maternity ward. Occasionally a high blood pressure problem was picked up when the woman was seeking help from a medical professional for a different health concern or reason. Those women who had a very high reading when they self-monitored their blood pressure as part of the BuMP study were told to seek medical help as soon as possible and knew to contact their midwife.
Claire had seen medical professionals for other health concerns during her pregnancy, such as dehydration. Signs of her poor liver function and high blood pressure were picked up following concerns about a mouth infection.
Claire had seen medical professionals for other health concerns during her pregnancy, such as dehydration. Signs of her poor liver function and high blood pressure were picked up following concerns about a mouth infection.
Age at interview: 39
Sex: Female
Age at diagnosis: 39
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So, I had been discharged mid-January with after the dehydration incident. I had a dental appointment at the end of January, and the dentist took one look at my mouth and said, "You must go and see your GP and you must go and see your GP today." She was very aware of my history, and because I was on Fragmin and low dose aspirin and things, she didn’t want to prescribe me medication for she said I had a mouth infection. She didn’t want to prescribe the medication because she didn’t know how it would interact with things.
Interact.
So she said, "Please go and phone your GP." Which I did, seen my GP that day; it was prescribed mouth drops, sort of orally to try and soothe the mouth infection. I had a community midwife appointment two days later, and the doctor said, "OK, we'll let you see your midwife." At that appointment my blood pressure was higher than it had been; the ketones were high and I think it was plus two protein, so she referred me to the triage unit who then admitted me.
Kate was feeling unwell. She took her own blood pressure at home and it was high. Although initially dismissed by a midwife, she later went into hospital with severe epigastric pains and was diagnosed with HELLP syndrome.
Kate was feeling unwell. She took her own blood pressure at home and it was high. Although initially dismissed by a midwife, she later went into hospital with severe epigastric pains and was diagnosed with HELLP syndrome.
Age at interview: 35
Sex: Female
Age at diagnosis: 34
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I got to, well, about 34 weeks and I had what I thought was indigestion. I woke up at night with pains between my ribs. And I thought, well this must be indigestion. There’s nothing mention it to the midwife, because I assumed it was indigestion. I actually told her it [laughs] it was indigestion. I had one episode of slightly high blood pressure, but the rest of it had been fine, and then I was told by the midwife that I was so low risk that she wouldn’t need to see me for another three weeks. So I thought oh wonderful. And then ten days later it all went horribly wrong.
I’d been out for a meal the day before. I’d been swimming that evening. I’d been tutoring as well. And on the way home, I was thinking about dinner, as pregnant women always think about their next meal, and I thought, I don’t feel hungry. And I thought, oh this is a bit odd. Didn’t think much of it, got home and didn’t feel right. Something I couldn’t put my finger on. You know your own body don’t you? You know when something’s not quite right. And, I went on the NHS Direct website and I’d felt a bit swollen, my ankles were larger than normal, slightly uncomfortable. My fingers were slightly tingly as well. And I went down the check list of pre-eclampsia and I thought well, general feeling of being unwell, swelling, and I thought well that’s a couple of things ticked off.
So I texted the midwife, and I said, “I don’t feel very well. Feeling slightly swollen. Possible pre-eclampsia?” And she didn’t reply for four days [laughs]. Which is a bit late by then. So I text the other midwife that I had a number for and she texted me back the next day. I didn’t want to call them because it was about 8 o’clock at night and I thought well, I’ll just sleep it off you know. So I called my partner. At the time we weren’t living together and I said, “I don’t feel very well.” And he asked me if I wanted him to come round, and I thought oh no, I don’t want to bother you. But something said, yes. Just you know, get him round. And then I have a blood pressure monitor, just as well and I took it and it was extremely high. It was 191/113. Which is high, and I thought oh gosh this is bad.
And I took [partner], I took my partner’s blood pressure and that was fine. So I took mine again and it was still the same high reading and on the NHS Direct site it had also said high blood pressure. So I called NHS Direct and I said, “I’ve got this, this, and this.” And they said, “You should call the hospital.” So I was due to go to have the baby at a maternity ward. I was going to have drug free [laughs] water birth, you know, how it goes. And they put me in contact with the, with another hospital, and I told the midwife exactly how I was feeling and I told her the reading on my blood pressure monitor and she said, “Well it must be faulty.” So I said, “I’m really sorry. I feel really stupid. Sorry to have bothered you.” And I thought right I’ll just go and sleep it off. And then within about an hour I started getting pains here. And my partner said, “Right we’re going into hospital.” And I said, “No, no, no. I’ll be all right and you know, don’t want to make a fuss. I’ve four weeks to go.” So we went in and by then I was almost doubled over in pain. It was, oh it was incredible. Almost unbearable. I later found out it was epigastric pain.
Pre-eclampsia was sometimes picked up while a pregnant woman was staying in hospital for another reason. Angela knew she had high blood pressure towards the end of her pregnancy and she went into hospital when labour started – the situation became more serious when her face quickly became very swollen and test results also showed protein in her urine.
Pre-eclampsia can also develop postnatally (after giving birth). Sometimes this was picked up during their hospital stay or after discharge (e.g. a check-up appointment, at an appointment for another health reason, an appointment made by the woman because of symptoms) or through self-monitoring.
Vicki had high blood pressure a few days after giving birth and returning home with her baby.
Vicki had high blood pressure a few days after giving birth and returning home with her baby.
Age at interview: 36
Sex: Female
Age at diagnosis: 36
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So he was delivered at 38 weeks, he was big enough, no no problems there. I came home a couple of days later, everything seemed to be fine and then I think it was on day five, he had actually developed a little rash and I think, you know, first time mum, really quite worried about it, thought we will pop down to, our midwives do a drop in clinic. So I popped down there and I had a splitting headache, which I’d had for two days but, as I mentioned, you know, as a migraine sufferer, that’s quite normal for me and I thought it was the stress of having a new baby, trying to breastfeed, everything like that and that’s what I put the headache down to. And, while I was sitting in the waiting room, I had to rush off and be sick and that’s when I thought, you know, oh dear, this is this is quite normal with a migraine as well, to be sick.
And then I went and saw the midwife and she said, “Are you okay?” And I said, “No, I haven’t been feeling well.” And when she took my blood pressure, it was the highest that she’d ever taken and I think it was up in the 210s, 150, or 130 or something like that. And so she was, you know, instantly, “You need to lie down. You need to get on your left side. We need to call an ambulance.” And I was rushed back into the [hospital] again. So yeah, and then, you know, they just monitored me. They put me on labetalol and more blood pressure medication, that kind of thing.
The amount of information women were given at diagnosis varied. Some women’s doctors or midwives had explained it to them in detail, while others felt they should have been given more information right from the start. Samantha Y was reluctant to look up about pre-eclampsia online in case it made her more frightened: “I just listened to what they [doctors] told me and left it at that really”. Emma was glad her GP had forewarned her that she would probably be staying in hospital for some time.
Mairi’s diagnosis changed from pre-eclampsia to HELLP syndrome. She appreciated her doctors being direct about the situation.
Mairi’s diagnosis changed from pre-eclampsia to HELLP syndrome. She appreciated her doctors being direct about the situation.
Age at interview: 36
Sex: Female
Age at diagnosis: 30
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How did you feel when you were first told you had pre-eclampsia or HELLP?
I was absolutely fine about it I think because I knew what it was because of my mum, and my mum likes to tell… like she'll be telling anybody about it. So, I knew what it was for the pre-eclampsia stage, and the doctor was very… the consultant was very good; I remember it was a lady; she was very good at explaining what HELLP was and it was the fact that these… my liver enzymes had started to break down; my body was breaking down my liver basically. And she was very clear cut of what it was. We are quite no nonsense people as well so we were like, 'Just tell us how it is; don’t dress it up as anything; we want to know the facts, and as long as we've got the facts we can deal with it.' So, she was… she… I remember her being really good, but I remember thinking that the information between then and after having [son’s name] wasn’t particularly clear but I don’t know if some of that is because they don’t want to tell you too much because they don’t know how much things are going to change. But we wanted to know more information but they were very cagey about, "Oh well it will depend "and," We'll have to see what happens," and I felt that was quite frustrating because it's my body and I wanted to know what was going on.
But I know they're not always going to tell you because they need to see what happens.
Munirah was diagnosed with pre-eclampsia at 25 weeks into her pregnancy. She looked it up online and read about the severities of high blood pressure problem.
Munirah was diagnosed with pre-eclampsia at 25 weeks into her pregnancy. She looked it up online and read about the severities of high blood pressure problem.
Age at interview: 27
Sex: Female
Age at diagnosis: 27
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But I don’t know if even the doctor at the first instant didn’t know how severe it was, because when I'd been… because when I'd gone into hospital on the Sunday night and they were like, “Your blood pressure's gone up and we think it may be pre-eclampsia,” I was there on my smartphone Googling “What's pre-eclampsia?” NHS website's great because it's got lots of information on there, so I was reading up on that and on it, it says things like, you know, “It can be detrimental to the baby and the mother but people-, women tend to get it later in the pregnancy and it can be controlled” and that kind of… I was like ‘OK maybe it can be controlled; maybe it'll be OK’ kind of thing and it was always-, at that point I didn’t ever think it would be as severe as it was.
Mm, yeah
But then kind of reading back on more different things and different websites, they say the earlier you get it in the pregnancy the more severe it was going to be. Whereas I didn’t know that information on that Sunday evening, or even kind of when I went to hospital on the Monday. It was kind of like afterwards when I'd been in hospital for a few days and had the chance to kind of Google more stuff and just read more things.
Women had different emotional responses to diagnosis. You can read more about women being asked to stay in hospital as well as their experiences of ongoing monitoring and treatment.
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