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] for a while” and sometimes “forever”.
Women sometimes struggled with very difficult emotions. While Lyndsey didn’t think she had postnatal depression, she felt “a little bit down for those first few months” after having her baby. Helen X “felt like it was me that was inadequate”. Kay described “a lonely journey” as she felt unable to tell other people what was happening at the time “because if I told them the truth, I'd have a meltdown”. Feelings like these could make it especially difficult for women to cope and, if they wanted it, seek support
Some women found there was a lack of recognition, including from health professionals, about the longer-term emotional impact of pre-eclampsia and how serious this could be. Angela said she had struggled as a very anxious new mum. Even though she told her health visitor that she had suicidal feelings and was told “someone [will be sent] to come and speak to you”, no one came.
Several women described their experiences as “traumatic”; sometimes a particular event or circumstance stood out in their minds: unexpectedly having their baby early, not having enough pain relief or their baby needing to be resuscitated. Kate, Kay and Angela thought they had post-traumatic stress disorder afterwards. Julie had “flashbacks” of the traumatic event. Some women had been critically ill and the realisation that they could have died was difficult to deal with and accept. Similarly, seeing their baby struggle to stay alive was incredibly distressing. As Kay explained, “when your baby's in intensive care, you see things that you shouldn’t see happen to your baby. Things that you'll never forget, and she'll never remember but you'll never forget”. Even after her baby was discharged home, Tracey found weigh-ins difficult and felt hurt by remarks from other new mums about her baby being very small.
Some women described feeling a sense of “guilt”, “blame” or “failure”. Some women worried that they had done something to ‘cause’ the pre-eclampsia. As Betty explained, “you feel really guilty, and the first thing you do I suppose is start thinking ‘did you do something wrong?’” Munirah’s baby was stillborn at 25 weeks after she developed pre-eclampsia. She had some regrets about being sent home from hospital and then returning a day later: “I wish I’d kicked up more of a fuss”. She and her husband decided not to tell their family or friends that their pregnancy was terminated because of the pre-eclampsia complications. She has since seen counsellors: “they say, ‘He wouldn’t have made it so you can’t feel guilty for making that decision,’ but then there’s always that thing of what if he did and now looking back at it, I think maybe I made the wrong decision”.
While some women didn’t feel that their experiences with pre-eclampsia had an impact on their relationship with their baby, others felt differently. Betty says she “felt a bond although probably not a regular bond and I felt sad whenever I was away from him but I also felt sad and guilty whenever I was with him as well”. Some were concerned their partners and family or health professionals would think that they didn’t want their babies because they didn’t immediately hold them or bond right away. Hanna explained that the first time someone tried to put her baby “in my arms, and I said, “I don’t want I don’t want her, get her away from me”. That was my first experience of my daughter. I didn’t want her anywhere near me. Still haunts me today that that I rejected her like that”. But many of the women who initially struggled with bonding
found it became easier with time. Tracey recalls worrying that she didn’t feel very maternal initially but then “you just find that love all of a sudden”.
- Ongoing anxieties and concerns
Several women thought their experiences with pre-eclampsia had made them more worried about themselves and their baby becoming ill. Julie thinks she is on the “extreme paranoid side with her [baby daughter] now, because of seeing them resuscitate her, any time if she gets a cough or a cold, I’m like ‘oh God, oh my God, oh my God, something’s happening’”. Paige felt anxious when she’s apart from her baby and worries about her health (see also the sections on long-term health for women
and for babies
). Women who went on to future pregnancies
or who were thinking about this often had worries about the chances of developing pre-eclampsia or HELLP syndrome again.Resurfacing emotions
A few people found that certain situations triggered their emotions to re-appear; for example, when a friend announced that they were pregnant or when watching a medical drama on TV. Kay also finds that “now, when I see a pregnant woman I get very anxious quite irrationally. I'm always like, “Even if you get a cold, go get to hospital, don’t miss any appointments,” whereas before I would have been, “Ach you'll be fine”". Munirah found it upsetting being around other pregnant women, including female relatives, after her baby died as a result of pre-eclampsia complications. She said it was a reminder that her son was absent: “He would have been five months now and it’s just he’s not here. There should have been a baby crying here, there isn’t”. Paige and Tracey found anniversaries of their experiences with pre-eclampsia affected them emotionally. Paige was “dreading” the lead up to her baby’s first birthday as “I was just reliving everything from the year before. Like, this time last year I was so ill”.Emotionally making sense of what happened
It sometimes took time to really understand what had happened. As Paige said, “looking back on it now you can see how scary it was but I think everything just happened so quickly, I just didn’t have time to catch up with it all”. Some women had gaps in their memories or were not given information at the time. Having to piece back together events could be difficult and upsetting. Betty finds that people often ask her what happened and it’s tricky to admit that she doesn’t fully know.
Some women talked about things that would have been helpful to know at the time. But others, such as Claire and Stewart (Mairi’s husband), were unsure if they would have wanted to know everything at the time or how serious the situation could become. Some women struggled with “what if…?” worries; for example, Julie sometimes thought of what could have happened if she had not got medical help when she did. Josie didn’t really realise how “at risk I was” until afterwards and her medical notes recorded how high her blood pressure had reached. The GP who referred Paige to hospital later told her that she had the worst case of pre-eclampsia he had seen in his career and that she would have died if it hadn’t been treated within 24 hours.Follow-up
A number of women and partners had seen their doctors (either GPs or at the hospital) to get more information about what happened and/or the chances of pre-eclampsia affecting a future pregnancy. Sometimes women had been offered these appointments, other times they had to request them. These meetings were usually focused on the medical details. Speaking to a medical professional about what happened sometimes helped get answers to questions that had bothered them. It also gave some women closure, so that they could move on emotionally. Others, however, found the meetings revealed new and frightening information. Claire was told that she had placental abruption (where the placenta comes away from the uterus too soon) which is “more scary for me now than the pre-eclampsia”.
A few women hadn’t been to meetings to ‘de-brief’ about their experiences but thought it could have been useful. Hanna hadn’t had a meeting like this and felt the hospital “didn’t want to know”. Olivia was in the process of requesting her medical notes nearly three years after having her baby, but felt she needs to be “in a good place” emotionally to see what they said.