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Pre-eclampsia and high blood pressure in pregnancy

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.

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Age at interview: 32
Sex: Female
Age at diagnosis: 31
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I tried hand pump. I tried a machine. I tried all the little tricks, you know, I was eating chocolate. I was having hot baths which people suggested. I was getting up in the middle of the night to, to try and express it. To keep try and keep in coming, and yes, every little trick that someone told me, I was trying to do. I went to the breast, they have a breastfeeding clinic. I went there a couple of times. I also had a lady from that clinic come and see me while I was in hospital, so I must have seen maternity staff about that specific issue about three or four times. And you know, it just, it just never happened.

Does that still upset you?

It upset whilst she was still in hospital. As time’s gone on because she’s grown well with, with formula milk and she’s, she’s still got a couple of issues, but, you know, she’s generally quite healthy, I kind of think to myself, there’s no point in me beating myself up about it any more. At the time it was upsetting, so I felt like a failure basically because there was nothing much I could do and the one thing I could do, I couldn’t do, for whatever reason. But as time’s gone on that’s got much easier to, to kind of bear.
 

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

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Age at interview: 45
Sex: Female
Age at diagnosis: 39
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I did have photographs and my partner was coming and going, and my mum was also there and coming and going, so they were telling me a bit about it. But, oh yes I wish that I could have got there before I did you know, in one way or another and I just… and you know the pain relief was… yeah was a thing I think because how you can, you know, how you can not give pain relief to somebody who's had, you know abdominal surgery and just sort of leave it, you know leave me with that kind of pain is… that is quite extraordinary to me. But again, you know and I just felt I think the care that I had on the postnatal ward was not as good as the care I'd had on the ante-natal ward. It felt like it was more busy; it felt that there was… even there was little understanding of the fact that I didn’t even have my baby with me you know, let alone kind of, you know anything else. And I remember one of the midwives - overnight my temperature was really high and so I kept throwing off my duvet and she kept putting it back on telling me, you know telling me I had to just have it back on you know and all of this kind of stuff. I just felt that… and I had other midwives telling me I had to get up, you know I had to pull myself up; I had to express milk; I had to do… you know I was… just felt I was having all these demands and I couldn’t do anything.
 

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

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Age at interview: 22
Sex: Female
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Yeah, I didn’t get any post-natal depression, but I did sort of- , I didn’t feel how I thought I would feel until I brought him home. For the first 10 days, I didn’t really… it wasn’t reality that I was a mum, if you see what I mean.

That must have been weird, having had a baby and not being with him?

Yeah, because I come home after about four days, because obviously I needed to get premature things and everything ready. …So, you know, my bump was gone and I had no baby… and it was a bit strange.
  • 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”.

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Age at interview: 32
Sex: Female
Age at diagnosis: 31
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And when I talk to other people who have had babies, the thing that I feel really upset about really cheated by, is the fact that however bad someone’s labour is and however many hours they have to go through it, or you know, even in most cases where they have a Caesarean, at the end of it, the majority of people get their baby to hold, and we didn’t have that. And that’s the one thing that still really upsets me actually.

And one of the other things that I sort of feel a bit cheated by is, because I was on a lot of medication I have very hazy recollection of that day. And I have to ask my husband. Every so often something will occur to me, and I will speak to another friend whose got a baby and I’ll sort of say to him, you know, “When you first went up there, what happened here? And when did they come and talk to you, and that sort of thing? Because I can’t remember a lot of things and again, you know, I’d always just had in my head that we would have a baby, you know, and she’d be given to us or he would be given to us and we’d kind of have to get on with it, and I just, I wasn’t prepared emotionally at all for what was going to happen.
 

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

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Age at interview: 27
Sex: Female
Age at diagnosis: 27
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I think it just really upset us even more because instead of getting better things were actually getting worse. And there was like this… there was a white spot on his brain and it's getting even bigger, like why is that happening? My blood pressure should be better now, like it should… it shouldn’t be as high as it was; I'm on medication, why is this happening? And it was just really upsetting. And she even had another consultant in with her and they said, "Oh, we think you should terminate the pregnancy," and I just burst into tears and so did my husband. I've known my husband for four years now and that’s the first time I've ever seen him cry – it was the hardest thing for the both of us to kind of deal with. This child that we wanted. That we did everything that we wanted to in life; we were ready, we had made so many plans to get pregnant and to be at a place in our lives where financially and socially and whatever, we were happy about this. This was our next step. We'd done lots of travelling and I said to my husband, I was like, "I want to travel loads before we have children," and we did, we managed seven countries in one year. I thought 'now we're ready, you know, we've done all the things we wanted to do and we're ready to have a child’. That was it, it was like all our hopes had just gone at that point. It was the worst thing in the world, it's so… I just can't imagine anything worse than that.
  • 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.

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Age at interview: 32
Sex: Female
Age at diagnosis: 28
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I'd had a scan the night before; a private scan, a reassurance scan the night before at seven weeks, four days it was and I'd seen a heartbeat and it was lovely. And I went along to my booking appointment la, la, la – "Here's the scans I had last night, you know look, there's a heartbeat," and the midwife said, "Heartbeat's only as good as the day you find it."

That was it, that was it. The whole pregnancy – couldn’t relax. So, even if I'd had a lovely strong heartbeat on the scan the day before I was into panic 24 hours later just like, 'Oh it was good yesterday but he might be dead today,' you know and coupled with my friend's stillbirth experiences, then not being taken seriously by doctors; the monitoring of them not being very good at the time. It was just like I can't relax, I can't do this you know. And being a first time mum as well you want everything to go OK you know; you want it all to be alright. 
 

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

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Age at interview: 38
Sex: Female
Age at diagnosis: 37
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Because even then we didn’t know whether he would actually make it. I guess that would have been good in hindsight if someone could tell us what the chances of survival were.

All we heard I think was the fact that he was born at 32 weeks and so therefore he has a… the chances are good, but you don’t know what that means. And so I know my husband found it really hard to bond because, a) well they look like little aliens because they're so small and they don’t look like human beings in the traditional sense. They don’t look like babies, they look like little aliens and he was very scared to see him. And you know part of you is always thinking, 'Oh, well we don’t want to get too attached because he might not make it.' And maybe the chances were 95% but we didn’t know this, so maybe that’s something to consider.

Mm mm. And do you think percentages would have been useful for you or how would…?

Yeah definitely

Yeah

Because genuinely we had no idea whether he was going to make it or not. I'm sure the nurses knew but… and also, now in hindsight, I know that if it was more serious he wouldn’t have even been in special baby care, he would have been in neonatal intensive.

Yeah, yeah 

So, I guess the whole journey is an education in itself, and now looking back I've realised he was fortunate enough to have been born at 32 weeks and actually he was fine, but I didn’t know that at the time.
  • 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.

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Age at interview: 42
Sex: Female
Age at diagnosis: 38
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The staff, they were just fantastic. They [sighs]… you know they were just… they were so encouraging you to look after your baby. I'd come in and I'd say, "Right, I'm in, she's mine now, I'll do everything that needs to be done," you know what I mean? And they were like, "Yeah fine," they were really, really good, and still are. Do you know we pop in the ward when we're in our consultant for her chest and we take them in some goodies and strawberry tarts or something, and we, when we go on holiday we always send them a postcard to say, 'Look, you know we wouldn’t be here if it wasn’t for you,' and yeah they're a good team.
 

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

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Age at interview: 39
Sex: Female
Age at diagnosis: 37
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How did it impact you in your mood, sort of your mental health do you think in those in those weeks and months after your daughter was born?

I was actually, I felt I wanted to experiment, to do all the things that I never experienced. I felt life was too precious. After what we’d been through, I felt lucky so I my husband probably found me irritating at times but I wanted to be spontaneous all the time and enjoy life. And I remember him to saying to me, at one point, “You are a mum though. You must remember that you are a mum. There are certain things that you’re not to do when you’re a mum.” And I said, “But I want to do them. I want to experience them. I might never have the opportunity again.” So yeah, I was different. I felt more, I felt I was loving every minute of my life. I it was, I, it was almost like, the first few months after having her, my daughter, was like a whirlwind. I just wanted to experience everything that I’d never done because I felt I was given a second chance so I wanted to do everything that I could possibly think that I thought that I ever wanted to do, I wanted to do it.
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.
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