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Pre-eclampsia and high blood pressure in pregnancy

Knowledge about high blood pressure in pregnancy and pre-eclampsia at the beginning

Early awareness of high blood pressure problems in pregnancy
 
Most people we talked to hadn’t known much initially about the importance of high blood pressure in pregnancy or conditions like pre-eclampsia. Being diagnosed was sometimes the first time they had heard of pre-eclampsia or HELLP syndrome. Kay said she knew “nothing, absolutely nothing [about pre-eclampsia]. I don’t recall hearing the term or knowing about it until the night of the delivery [of the baby at 27 weeks]”. While others had heard of the condition, they hadn’t taken much notice of information because they didn’t think it would affect them.
 
Doctors and midwives use different descriptions for conditions related to high blood pressure in pregnancy, such as ‘pregnancy-induced hypertension’, ‘pre-eclampsia’ and ‘HELLP syndrome’ (you can find out more about these conditions and the differences between them here). The different terms used can be very confusing for women, particularly since any pregnant woman’s blood pressure and condition can change over time. Angela thought of ‘hypertension’ as a less scary type of high blood pressure problem than pre-eclampsia, and hoped it would not become more serious: “even when I had the high blood pressure, I was adamant I wasn’t going to get pre-eclampsia. And I would say, “It's OK, I'm not going to get-, it's OK, it's not pre-eclampsia, it is hypertension in pregnancy”". 
 
The ‘pre’ in ‘pre-eclampsia’ could wrongly suggest that it wasn’t a condition in itself. As Abigail explained, “whenever you hear [someone] saying, “What is pre-eclampsia?” Well, it’s ‘pre’ getting eclampsia but [laughs] then what’s that?”
 

Samantha X started to learn more about pre-eclampsia through webpages showing the week-by-week changes that happen in pregnancy.

Samantha X started to learn more about pre-eclampsia through webpages showing the week-by-week changes that happen in pregnancy.

Age at interview: 32
Sex: Female
Age at diagnosis: 31
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What about your understanding of pre-eclampsia? Had you heard about it before it happened to you?

I had heard of it, but again it was one of these things where I’d sort of, looked on the, when I found out I was pregnant I’d looked on the NHS website, you know, a bit about pregnancy, followed those things where it said, “Week one your baby’s doing this, week two your baby’s doing this,” and that sort of thing. And it was something that had come up and I’d not really paid much attention. I knew a couple of people that had had it but they’d had it very late on, sort of 37, 38 weeks and had had a few days in hospital before their baby was born. But hadn’t really ever given it much thought.
 

Claire was told she had some problems with high blood pressure but didn’t remember the term ‘pre-eclampsia’ being used in appointments for some time.

Claire was told she had some problems with high blood pressure but didn’t remember the term ‘pre-eclampsia’ being used in appointments for some time.

Age at interview: 39
Sex: Female
Age at diagnosis: 39
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Did you have any knowledge of pre-eclampsia previously?

Not really. It was something that was discussed in sort of my midwife appointments later on, and when I was discussing sort of pregnancy history with my mum, and also my aunt – my mum's blood sister – they both said that they had been hospitalised at the end of their pregnancy due to high blood pressure. But at that time pre-eclampsia wasn’t a phrase that was used; it was just you’ve got a bit of blood pressure; we need to keep an eye on you. So, I relayed that to my midwife and it was pointed out that I could be a candidate for it with being an elder…elderly pregnant woman as well being nearly, you know thirty eight at delivery. So, yeah it was always classed as something that could be a risk, and to look out for high blood pressure or protein in my urine.
 

Dr Khan describes the normal changes to a woman’s blood pressure during pregnancy. Monitoring blood pressure and tracking differences in the readings are important.

Dr Khan describes the normal changes to a woman’s blood pressure during pregnancy. Monitoring blood pressure and tracking differences in the readings are important.

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Over the course of a pregnancy, blood pressure does not typically stay absolutely steady. It usually starts at a certain level. During the middle of the pregnancy, it would usually slightly and gently fall. And towards the end of the pregnancy, the blood pressure will slightly and gently rise roughly back to the level where it was at the start. However, we have to track these blood pressure changes by checking blood pressure at each routine check because this is the method by which we work out if, instead of these normal changes, a woman is starting to develop hypertension in pregnancy or pre-eclampsia.
 
When we measure blood pressure, there are two separate numbers. The first is called systolic blood pressure and the second is call diastolic blood pressure. The reason you have to take two separate measurements is because, over the course of one heartbeat, how high or low the pressure is inside a blood vessel changes. When the blood has been forced out from the chambers of the heart into the large blood vessels of the body, the blood pressure initially is relatively high. When the heart muscle subsequently relaxes, so that the chamber can fill up with more blood to be pushed out over the next cycle, the pressure is relatively low. So we look at both numbers because both are important and sometimes we look at the difference between the two.
Some people had worked in health professional roles (e.g. as nurses or midwives) which gave them insights into the seriousness of pre-eclampsia. Aileen was a neonatal nurse and had looked after babies born prematurely as a result of pre-eclampsia. Helen Y said she “didn’t know too much about pre-eclampsia” but she had worked in a diabetes clinic and so knew a bit about other health conditions which can involve raised blood pressure.
 

Komal knew a bit about blood pressure in pregnancy from her training in physiotherapy. One of her relatives developed high blood pressure and had a caesarean section.

Komal knew a bit about blood pressure in pregnancy from her training in physiotherapy. One of her relatives developed high blood pressure and had a caesarean section.

Age at interview: 23
Sex: Female
Age at diagnosis: 23
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And where have you heard about BP, blood pressure being dangerous to the baby and the and the mother?

I was a physiotherapy student. I was a medical student and during my studies I heard it obviously and all that, that it’s not good, high BP is not good 

It’s not good for any human being to have a high BP and pregnant women are at more risk because two lives are connected to one another, at that time. So a high BP can affect the mother as well as the baby also. So that’s why I knew about the blood BP a lot before that because I am connected to a medical profession.

And did you know anything about a condition called pre-eclampsia before your pregnancy?

Yes, I know about it. I heard about it but not much. No, I don’t have much information about it but I know that it is a condition.
Knowing other people who have had high blood pressure or pre-eclampsia
 
Some had known other women who had pre-eclampsia or other problems associated with high blood pressure in their pregnancies. This often included relatives (their own mothers, sisters, aunties, cousins) and friends. Knowing someone who previously had pre-eclampsia could raise awareness of the condition, but it didn’t necessarily mean that in-depth information had been shared or they had an understanding of what the condition entailed.
 

Philippa’s early understandings about pre-eclampsia were based on her Mum’s experiences of having the condition.

Philippa’s early understandings about pre-eclampsia were based on her Mum’s experiences of having the condition.

Age at interview: 33
Sex: Female
Age at diagnosis: 33
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My mum had pre-eclampsia when she was pregnant with me.

Okay.

So it was something we’d kind of been told about when I was little and then, when I was pregnant with my first child, obviously, having high blood pressure and eventually, having pre-eclampsia symptoms, at that point as well, I did learn quite a lot. I knew it was a very dangerous condition and, thankfully, everybody in both cases was fine so yeah, I did we did know quite a bit about it. I was quite.

Pre-informed.
 

Amy knew a little about pre-eclampsia because her friend developed it. Amy took part in a research study to monitor blood pressure during pregnancy.

Amy knew a little about pre-eclampsia because her friend developed it. Amy took part in a research study to monitor blood pressure during pregnancy.

Age at interview: 34
Sex: Female
Age at diagnosis: 31
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So how much did you know about sort of hypertension and pre-eclampsia before the trial?

I’d heard about pre-eclampsia.

Okay.

I hadn’t heard about hypertension. A friend of mine had pre-eclampsia in her first and second pregnancy but at different times so that’s how I that’s how I knew of it. But I didn’t know the symptoms of it so well, you know, swelling and protein in the urine, and that kind of thing, didn’t know that at all. So I wouldn’t have known what to look out for and you know, it can strike at any time whether you’re having your blood pressure done or not. So yeah, that was that was really my only my only awareness of it was somebody else having had it and even then, I wasn’t clear about what it was.
 

Kay’s sister had developed pre-eclampsia 37 weeks into the pregnancy. It seemed to have no major impacts, so Kay wasn’t aware of how serious it could be.

Kay’s sister had developed pre-eclampsia 37 weeks into the pregnancy. It seemed to have no major impacts, so Kay wasn’t aware of how serious it could be.

Age at interview: 42
Sex: Female
Age at diagnosis: 38
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I didn’t realise it was life threatening. I'd heard lots of people…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.

And I didn’t know, one, that you can get it as early…because they think obviously it started at twenty two weeks when my ankles swelled up. I didn’t know you could get it that early.

And I simply didn’t know it could take my life and I could lose my baby. I wasn’t aware of any of that because with my first pregnancy I had never experienced that. In fact up until then I didn’t know anybody who'd experienced pre-eclampsia so early; I didn’t even know our local hospital, which is seven miles from me, had a special baby care unit because I hadn’t need to know that. So it was all quite frightening. 
‘High risk’ pregnancies
 
There are several risk factors that mean some women are more likely to develop pre-eclampsia. These factors include:
 
being overweight
being an ‘older mother’ (usually defined as over the age of 35)
having a family history of high blood pressure or pre-eclampsia in pregnancy. 
 
A few of the women we spoke to, such as Vicki and Aileen, already knew that they had high blood pressure before they became pregnant and took medicine for this. Vicki was told to stop taking her medicine when she became pregnant and Aileen’s medication was changed for another one which would be safer for her baby.
 
Some people we interviewed had taken part in a research study (called ‘BuMP’) where they measured their own blood pressure at home throughout pregnancy. Some had been invited to take part because they had risk factors which meant they were more likely to develop pre-eclampsia. 
 
Having a risk factor (or several risk factors) doesn’t mean that a woman will definitely develop pre-eclampsia. Likewise, women without any risk factors may go on to develop the condition in their pregnancies. Mairi’s blood pressure has always been “on the low side” of ‘normal’ but she developed high blood pressure during pregnancy and eventually was diagnosed with HELLP syndrome. As Elaine said, it can be “quite random” as to who develops problems and who doesn’t.
 
 

Although some risk factors are known, there is ongoing research into the causes of pre-eclampsia.

Although some risk factors are known, there is ongoing research into the causes of pre-eclampsia.

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Doctors and scientists have been thinking about high blood pressure in pregnancy for many, many years. We’re still not absolutely sure what the cause is. We know that some women are more likely to get blood pressure problems in pregnancy. For example, women with some medical conditions, women in whom blood pressure problems runs in the family. Women whose mother had pre-eclampsia are more likely themselves to develop pre-eclampsia. But, although we understand it quite well what types of women might be more at risk of pre-eclampsia, in truth, all women can potentially can get pre-eclampsia in pregnancy. There’s been a lot of focus from the scientific community, over the last few decades, about the reasons why women might get pre-eclampsia. We still don’t know for sure but we think there are a lot of factors involved here. Some of them might be inborn factors that women are born with, some might be factors that are acquired over time, for example, a change in weight or having diabetes. We think that there’s probably something which goes wrong at the microscopic level in the ways in which cells interact with each other and pass messages to each other. Blood pressure can go up if blood vessels respond to these messages in certain ways. For example, if the diameter of a blood vessel narrows, that might lead the pressure to rise [phone buzz] and that rising blood pressure then later shows itself as pre-eclampsia.  So there’s going to be a lot of focus in the next few years about why it is that some blood vessels narrow in their diameter. 
Awareness of pre-eclampsia in the wider context
 
Angela, Helen X and Kay said they found few details in pregnancy books and magazines about pre-eclampsia. Kate said, “To find a reference to HELLP syndrome is virtually impossible”, in information about pregnancy. Linda had seen an episode of Downton Abbey in which a character died of eclampsia (a condition involving seizures which develops when pre-eclampsia cannot be controlled or stopped). This made her aware that the condition can be very “dangerous”.
 

Angela thought the public perception underestimated the risks of pregnancy and the reality of having a baby, perhaps to avoid frightening those who are currently pregnant or plan to become pregnant.

Angela thought the public perception underestimated the risks of pregnancy and the reality of having a baby, perhaps to avoid frightening those who are currently pregnant or plan to become pregnant.

Age at interview: 36
Sex: Female
Age at diagnosis: 34
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I don’t know if it's from just public perception of having a baby, because I remember even before I'd be pregnant you hear, 'Well you're not …you know pregnant women, well they're not ill, they're not…' you know when people are like, 'Oh I'm pregnant and I've got this, that and the other,' that kind of thing.

But it's like I'm not, you know…but it actually is a big thing, it's huge, it's huge having a baby and people just under-estimate it massively, and I don’t, you know …yeah it's funny, it is big. And there's… I don’t know if there's still that…that kind of that school of thought, like not until you’ve had a baby you realise but then you don’t want to scare other mums off, so no-one really tells you the true picture of what's happening.

Because I remember me and my [national patient charity] group, we were like…I said, "Do you know I'm going write a book called The Truth, and really what it's like." And then as time passes you're like, 'No, I don’t want to scare my friend who's just about to go through all this.' I've got two pregnant friends now. That’s, you know they know what I went through and they know it's hard but they didn’t go through it so it's fine; they don’t know how I feel, but I wouldn’t scare… I'm not going to go through and scare somebody, so I think that’s where it all just gets watered down again.
 

Kay felt underprepared when she developed pre-eclampsia. She remembered it being briefly discussed in a book but felt this didn’t give enough insight.

Kay felt underprepared when she developed pre-eclampsia. She remembered it being briefly discussed in a book but felt this didn’t give enough insight.

Age at interview: 42
Sex: Female
Age at diagnosis: 38
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You're just confused, helpless in a way because I didn’t know anything about the condition. So, confused because I didn’t realise it could happen at so early, and you just think, 'That can't be right, you know I've never heard of that happening to anybody.' And I think even when you're pregnant you're never given much information on pre-eclampsia. It's sort of skimmed over [laughs]. Whoosh here's a page of a book. I had this pregnancy book, I can't even remember what it was, and it had a wee section on pre-eclampsia, and it certainly didn’t tell me anything that happened to me so it kind of sugar-coated it a bit where that’s actually… and it definitely didn’t mention you can get it so early.

The pregnancy books are really designed for the third trimester pre-eclampsia which is where it mainly occurs. So yeah, it was very confusing and very, very frightening.
Some people had learnt about blood pressure at antenatal classes. Melissa said she “vaguely” knew about pre-eclampsia “because I’d been to my ante-natal classes and I’d read a lot of books”. However, some women had been unable to attend antenatal classes because of having pre-eclampsia (if they had been admitted to hospital and/or delivered their baby earlier) and so they missed out on this source of information. A few people highlighted that free antenatal classes are often booked up and NCT classes are not affordable for everyone so information through this route is not always accessible. You can find out more about the different sources of information on pre-eclampsia and HELLP syndrome here.
 
Looking back
 
For those who did go on to develop pre-eclampsia, their initial lack of knowledge stood in stark contrast to the understanding they developed. Josie said that her knowledge was “certainly not as much as I know now”. Some found that others opened up to them about their own similar experiences. Munirah said that “now that I know about it, it seems to be kind of more common than I thought”.
 

Stephen didn’t know much about high blood pressure conditions when his wife developed HELLP syndrome. In telling people about what happened, he has since learnt about others who have had problems in pregnancy.

Stephen didn’t know much about high blood pressure conditions when his wife developed HELLP syndrome. In telling people about what happened, he has since learnt about others who have had problems in pregnancy.

Age at interview: 41
Sex: Male
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As I said to you that, you know I wasn’t really that au fait with pre-eclampsia full stop.

Yeah sure.

And then you’ve…you know so it's a sort of assumed knowledge and then you’ve got a variant or whatever you know and so just sort of filling in some of the back story really, the bits that you didn’t have. 

And then, you know you get that classic situation where you’ve had something happen to you and it's like, 'Oh so and so's sister had it and she was really poorly and then…oh and blah blah blah,' and then suddenly everybody's coming out the woodwork, because you know like people keep it to themselves until there's a common thread of, you know like other people having had it so.
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