Emotions during and soon after pre-eclampsia

Women we interviewed who had pre-eclampsia or HELLP syndrome described a wide range of emotions throughout their illness – from starting symptoms, to diagnosis, being in hospital, giving birth and physically recovering afterwards. Women often described their experiences as being an emotional ‘rollercoaster’. Sometimes these emotions came and went quite quickly. Kate found that, after a few weeks, ‘I can talk about it with ease, and not joke about it, but even smile about certain things that seemed so terrible at the time’. But for others, they endured.

Samantha X faced difficulties with breastfeeding. This upset her a great deal at the time and soon afterwards, but had become easier to cope with since.

Age at interview 32

Gender Female

Age at diagnosis 31

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Josie talked about some of the upsets she had whilst in hospital after her baby was born.

Age at interview 45

Gender Female

Age at diagnosis 39

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Kelly said it took a while to sink in that she had given birth to her baby.

Age at interview 22

Gender Female

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Shock, denial, upset and disappointment

The diagnosis of pre-eclampsia and its consequences often came as an unexpected blow. It was often a shock because, as Paige said, ‘you just don’t think it’s going to happen to you’. Sometimes it took a little while for this shock to set in. Kay said seeing the incubator that her baby would be in after the birth was the moment when ‘it really hit me, I’m really ill, I’m not going to full term with this baby’. Up until then, she hadn’t accepted that the situation was so serious, partly because ‘you don’t want to admit how ill you are with it’.
Having pre-eclampsia often profoundly disrupted women’s plans and hopes for the rest of their pregnancy and birth. Tracey explained: ‘going from a day at work to then the next day 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’. Some women described frustration and anger for having been ‘robbed’ of having the pregnancy and birth experience they had expected or wanted. As Claire said, ‘I feel cheated that I wasn’t able to deliver her [my baby] myself. I feel cheated of the last few weeks of my pregnancy – the prep time and things – it wasn’t how I thought it would happen’.

Samantha X said there were some things she felt cheated by.

Age at interview 32

Gender Female

Age at diagnosis 31

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Munirah and her husband were devastated when the news came back that her unborn baby’s ill-health was getting worse.

Age at interview 27

Gender Female

Age at diagnosis 27

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Fear, anxiety and worry

Many of the women, as well as their partners, had been frightened about the impact of having pre-eclampsia and the risk to their babies as well as themselves. Tracey explained her fear: ‘your life is in someone else’s hands and there’s nothing you can do about it’. Sometimes worries didn’t stop once the baby was born. Angela’s heart rate kept flying up and she started having panic attacks. She remembered hearing that pre-eclampsia ‘can sometimes stay or come back up to six [to eight] weeks after. Now, that was it, it was stuck in my head. I virtually counted down that six weeks’. Kay was ‘paranoid’ she might catch a cold whilst her baby was in SCBU (Special Care Baby Unit).

Olivia’s anxiety was sky high throughout her pregnancy. In particular, there was a comment made at an ultrasound scan by a midwife that stayed with her. The problems she had with her blood pressure added to these worries.

Age at interview 32

Gender Female

Age at diagnosis 28

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Betty didn’st know for a long time whether her son was likely to survive or not. Living with this uncertainty was hard.

Age at interview 38

Gender Female

Age at diagnosis 37

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Relief

Women, and their partners, talked about a sense of relief when immediate health problems resolved or the outcomes looked more hopeful. Julie said, ‘there’s a lot of people that have had the same thing as me that don’t come home with a baby and I just think, I have to keep that in my head that we’re okay’. Stewart remembered it was a ‘big relief’ for himself and his wife when their baby was born. Kay was ‘over the moon’ when her baby daughter was moved from NICU (Neonatal Intensive Care Unit) to a High Dependency Unit as it was a step in the right direction for getting her home. Some women who had been critically ill spoke about feeling relieved to have made it. Kate cried ‘with sheer relief’ when she got home and explained to her husband ‘I am just so happy to be alive and be here’.

Appreciation and admiration

The women we spoke to were grateful to the people who had physically and emotionally helped them through very difficult times. This included their partners and family members, and also health professionals. Munirah remembered a number of midwives: ‘they still stick in my brain, and I still remember their names because of how lovely they were to me and how kind of friendly they were’. Kay said her doctor ‘gave me the belief that it was [going to be fine]” and comments from one of the specialist nurses caring for her baby were reassuring, as she thought ‘he’s right, he sees these babies every day, he knows [that my baby will be okay]’.

Kay still thought of the hospital staff who helped her baby survive.

Age at interview 42

Gender Female

Age at diagnosis 38

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After everything she had been through, Hanna felt exhilarated to be alive and make the most of life.

Age at interview 39

Gender Female

Age at diagnosis 37

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It wasn’t only the women who were affected emotionally, it could also be their partners, wider family members and friends too. However, Stewart thought partners can sometimes end up having to put their emotions ‘to one side’ in order to support the woman. Kay threw a party when her daughter was discharged from hospital, in part because she knew how tough her illness and her daughter’s premature birth had been on her family: ‘it was for everybody that had been affected; we had a party and a disco and a buffet and we had a really good day out in the local club, and it was kind of like introducing her to everybody’. You can find out more about the impact on partners, wider family members and friends here.

Lasting emotional impacts of pre-eclampsia

Some women we spoke to said there were longer-term emotional impacts following their experiences with pre-eclampsia. Angela felt the impacts 'can live with them [women]...