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?”
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.
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.
‘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.
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”.
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”.


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