Diagnosis: feelings and impacts
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. 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”. 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”. 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.