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.
- 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”.
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).
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]”. 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