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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
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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