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Pre-eclampsia and high blood pressure in pregnancy

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] 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.
 

Angela described how she felt in the weeks and months after having her baby.

Angela described how she felt in the weeks and months after having her baby.

Age at interview: 36
Sex: Female
Age at diagnosis: 34
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I often want-, you know, I'm like was it postnatal depression, was it post-traumatic stress. I was always in the line of post-traumatic stress; it was an incident that happened. Quite a lot of the time I explained it like I just feel my head's here, my body's here, they're out of balance, they’ve gone like this.

And they each just line up again; like my body's doing something my mind's not letting it, you know it was kind of like that and we were… I was just so out of balance. And it just felt like the adrenaline tap was on all the time and it had been left on and I'm trying to turn it off. But I just felt like shhhh, so I just… I don’t know if it was the hormones, the drugs, the whole episode you know. 
 

Julie said it took two years before she felt able to talk about what happened to her and her baby as a result of pre-eclampsia.

Julie said it took two years before she felt able to talk about what happened to her and her baby as a result of pre-eclampsia.

Age at interview: 34
Sex: Female
Age at diagnosis: 32
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I have to say with the caesarean side of things and the pre-eclampsia that was something I didn’t speak about. I wouldn’t. Because it was, it was horrible. More for the fact because of what had happened to her rather than to me, because I was like, you know, I’m a bit more sturdy, I can deal with things a bit more, whereas a little tiny baby, but it wouldn’t be a point of conversation because I wouldn’t, I wouldn’t talk about it. I’d just sort of try and leave the room or… whereas now I’m quite happy to talk about it. I just think you know, things happen, and if people can be educated by it and learn from it, then why hide from it. But its took me probably nearly two years to get to that point where I feel able to talk about it without it being horrible. Whereas now I just think oh yes, you know, we’re through it, we’re all right.

What was it that made you feel you couldn’t talk about it? You didn’t want to revisit or…?

Yes, it was, it was horrifying, because it just happened so fast and we never really got any answers to what had happened. The only thing that we got really was day three when we were on the ward, my consultant with a couple of junior doctors came in to see us. And she said, “If you hadn’t had the caesarean you would have died, and your baby would have died.” And that was it. That’s everything we’ve been told about it, apart from stuff that I’ve researched. Because I wanted to know what was pre-eclampsia? Why have I had it? What its to do with? Because that’s my kind of mind. I want answers to why things go wrong and we’ve never had that opportunity to talk to people.
  • Trauma
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.
 

Kay’s experience left her traumatised. She was rushed to Intensive Care multiple times and her baby spent three months in hospital.

Kay’s experience left her traumatised. She was rushed to Intensive Care multiple times and her baby spent three months in hospital.

Age at interview: 42
Sex: Female
Age at diagnosis: 38
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I suffered through PTSD through the whole experience. I didn’t know that’s what I had. I knew I wasn’t right. I was nightmaring every night the same… woke up the hospital. It happened when she was in there; it happened for years after she was in there. They don’t tell you that’s something… I looked at the Bliss website and it's quite common [sniffs]. And the doctor said, "Oh you were three times rushed to intensive care." You go down there, you don’t know if you're coming back. And once you get through all that stress, you’ve got the stress, 'Is my baby going to live?' and it's the most stressful thing in the world. If people… people don’t understand your family they want to try and understand but they don’t.

You know. You're going to bed at night and you're thinking, 'Am I going to have a baby in the morning; is she going to be alive?' If the phone rings when we're not in the hospital is that… is that my mum phoning to say, "How are you doing?" or is that the hospital saying, "Look I'm sorry she's passed?" I said, "Don’t phone me, nobody phone me."

Just… and then we were told, after a while she had a scare infection, we weren't allowed her out. My first cuddle with Imogen she was ten days old. I spent the whole half hour holding her crying, she was so small. And she took an infection and we knew one infection – game over – and she fought through it, and we weren't allowed to hold her for two weeks. 

Not being able to hold your tiny baby who's fighting for her life [cries], to comfort her, to let her know you're there, it's so hard [sniffs]. 
  • Feeling guilty
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”.
 

Paige blamed herself initially, but has come to accept that developing pre-eclampsia was not her fault. She wonders whether the symptoms could have been picked up sooner though.

Paige blamed herself initially, but has come to accept that developing pre-eclampsia was not her fault. She wonders whether the symptoms could have been picked up sooner though.

Age at interview: 20
Sex: Female
Age at diagnosis: 19
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It was not something you expect; you don’t expect to have the baby at seven months anyway but for it to be through an illness that, at the time you blame yourself for, even though there's nothing you can do about it; it's going to happen no matter who you are. If it's going to happen, it's going to happen and it's…I think the most annoying part about it was if it was caught a bit sooner I could have avoided all of that if I was actually listened to. Not saying that I would have gone full-term; it may still have happened but you have these questions in your head. Like, right if I had the medication sooner would I still be pregnant? If I had different stuff when they’ve got to this stage would I have been able to have… be induced? OK, I was still only 32 weeks; would I have been able to be induced because there wouldn’t have been such an emergency.
 

Claire struggled with feelings of guilt after she had pre-eclampsia and her baby was born early.

Claire struggled with feelings of guilt after she had pre-eclampsia and her baby was born early.

Age at interview: 39
Sex: Female
Age at diagnosis: 39
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You know the guilt never goes away; you're guilty for having had your baby early because your body's caused this. And then you can't feed her properly and, you know that huge… you're in an emotional state anyway, you're hormonal but the guilt is a huge, huge thing.

Where do you think these ideas of guilt come from?

Do you know it's probably because it… your natural instinct is that you carry to term; you might even go overdue, you know most people they're overdue rather than, you know bang on 40 weeks you have your baby. The fact that it's been… your body who should be carrying your child; your body started to fail.

Yeah you kind, you do blame yourself; your job is to protect your baby, and you kind of feel my body hasn’t let that happen. I think as well my body's failed previously with having the miscarriages, that you do have all these feelings. Whether they're legitimate or not but you do have these feelings that you need to process and work through.
 

Kay had feelings of guilt, which made it hard to talk to other people about what happened.

Kay had feelings of guilt, which made it hard to talk to other people about what happened.

Age at interview: 42
Sex: Female
Age at diagnosis: 38
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I find it hard to tell people what was going through my head in those days. Because you have a lot of guilt.

You know, before she was born – I know I'm ill; I know this baby's going to come early; I know this baby might die and it's my fault, and everybody's like, you know now, "Oh you can't say it's your…" "Yes I can, it was my fault. Nothing is ever going to make me think it wasn’t my fault," you know what I mean? If the baby had died it was because I had pre-eclampsia; it doesn’t matter why I had it, I had it and I felt very responsible for that. When she was first born and she was so ill it was hard; it was like I felt that was… I had caused that, I felt responsible for how ill she was.

I still feel responsible. She has a hard life; she struggles to breathe, she tires easy, she doesn’t run around like other kids do, and I still feel responsible, that will never change.

It's a hard thing to admit. I think the fact that nobody really knows why pre-eclampsia happens and therefore we can't stop it. It's not a thing you can stop. Once you’ve got it there's not a cure. You know they can give you medication to keep your blood pressure down and rest and whatever, but they can't stop it. It just, just gets wild and it progresses so aggressively. You know where you go on… you go in thinking, 'Oh I've got a cold,' and three weeks later you're thinking, 'I just want to die this is so bad.'

That’s quite an aggressive illness and yet we know very little about it. They… after she was born the consultant said, you know, "We're going to send the placenta away and we'll do tests on it." But you'll still not have an answer.
  • Impact on bonding
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”.
 

Sarah’s family had some concerns that she might “reject” her baby because her pregnancy and birth had been difficult.

Sarah’s family had some concerns that she might “reject” her baby because her pregnancy and birth had been difficult.

Age at interview: 37
Sex: Female
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And I remember my sister-in-law coming up with a bag of clothes, because obviously we weren’t expecting to be there, and she sort of looked in and she said, she says to this day, “I always wondered what I was going to find, with you, when I saw you.” But she said, “The first thing that I” - because everyone was saying, “Oh my God, how’s she going to be? She’s going to reject him and she’s not going to want him. And she’s so, going to be depressed” or whatever. And she said, “I always remember looking into the room and saying, “I’m not staying I’m just dropping off your bag of clothes’” and she said, and I just looked around and said, “He’s just the most beautiful thing” - and she knew. 
 

Josie’s baby was in a Special Care Baby Unit for some time. She found it easier to bond and connect with her baby once they had both been discharged from hospital.

Josie’s baby was in a Special Care Baby Unit for some time. She found it easier to bond and connect with her baby once they had both been discharged from hospital.

Age at interview: 45
Sex: Female
Age at diagnosis: 39
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When he got home… I mean the bonding, you know it did sort of start to get much easier once he got home. I was still very, very worried but, no it did happen, it did happen once he started to get home. And once he got big enough to , to get… to go into a sling, you know we had a baby boy sling – it's the best thing I've ever had and it's what I'd recommend to all new mums particularly, you know with that kind of worry. So, once he was big enough for that both me and his dad used to carry him around the whole time, and we had a lot of well-meaning relatives who told us that we needed to put him down and we were, you know teaching him poor habits by carrying him around all the time. But you know I thought, 'Well, given that we missed all the first weeks I think he deserves to be carried around for his first year’.
  • 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.
 

Angela had panic attacks after giving birth and became very anxious that she might have other health problems.

Angela had panic attacks after giving birth and became very anxious that she might have other health problems.

Age at interview: 36
Sex: Female
Age at diagnosis: 34
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Every time I heard… say if I heard my husband on the phone telling people, "Oh you know, this is what's happened," my heart was racing you know, and I used to say to him, "Can you not tell people, or in my earshot, and can we not talk about it to anyone today because I can't… I get panicky." So I was just was, yeah just constantly panicking; constantly worried I was short of breath to the point where I was having follow-ups at the hospital every day. 

They… again I think… I don’t know if it's because I'm a nurse or what, or I work for the same Trust, but they were brilliant. I virtually was seen… we'd go down and see this consultant in the medical management, like the AMU [Acute Medical Unit] kind of thing every day [laughs], and she would do a top to tail, and she was checking my stats and that and… but this is where like the hypochondria, I think kind of started kicking in, and I was convincing myself I had a PE [pulmonary embolism]; no, a DVT [deep vein thrombosis] I think first. Then I… or I thought I had a PE – one of them – to the point where I virtually ended up convincing this poor consultant that she ended up… the only way I could ever appease my mind was to go and have tests. So she… I went and had a scan, looks fine, no PE and everything, and there was nothing, they couldn’t find anything wrong with me. I was having… going to go for a 24 tape monitors because my heart rate was still high; it was still in the 90s, 100s. Blood pressure was OK on the tablets so it was fine, it wasn’t going up anywhere. But then sort of… so, I remember coming home and my mum going… cos she was brilliant; she would stay up, and she was like…"So, have you… so, you're fine there's no PE?" I said, "No, that’s good," and then I just sat there and thought… I had a pain in my thigh and I went, "Aah I've got a DVT." That was it. I was convinced I had a DVT. It kept moving and it was so scary because this isn't me, I'm a very rational person, very, you know just not like it. And it was real, it was so real that I was driving my husband round the bend; I was driving, I think, everyone round the bend. I just always thought something was wrong.

Doing the dreaded looking through Google making things then a whole lot worse; laying awake, panicking, worrying; worrying that I was unwell; never wanted to be far from the hospital in case I needed to go back in it. So in the end… and the consultant after that PE time did sit there and say, "Maybe there's something else going on here in your head," you know nicely, and she suggested I go and see the GP, which I said, funnily I have arranged.
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”.
 

Tracey started seeing a counsellor 11 years after her experience with pre-eclampsia. Every year since, she’s struggled emotionally around the time when she was admitted to hospital and her baby was born prematurely.

Tracey started seeing a counsellor 11 years after her experience with pre-eclampsia. Every year since, she’s struggled emotionally around the time when she was admitted to hospital and her baby was born prematurely.

Age at interview: 39
Sex: Female
Age at diagnosis: 29
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You discussed that you were seeking help from a counsellor now?

Mm

Many, many years later. How did you access that support?

The internet. I figured… through lots of personal reasons I needed to figure some stuff out, and actually I always knew that having a premature baby was a massive thing for me, so I just looked up counsellors, and I went to visit a few and there was actually one I just clicked with so, I see her every other week.

And it's been great actually, it's talking about what happened with my daughter and lots of other things to unpick. But she… yeah that is a massive thing that I've had to overcome. I've been finding the last ten years… the hardest part for me is the… is between her birthday and her due date – that’s the worst three months of the year for me, because when you're in that time, say August/September, that’s such a long time when you're in it and you think that’s the time that the baby should have been inside me and to be out three months early is a massive amount of time, and that I can never get my head round, and especially for her to be, you know walking, talking, living a great life is just incredible, but I do struggle with that period every year and, you know I need to stop that; that’s… it's… I don’t know how I get over that but yeah I do get very teary thinking about her, the birth and me.
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.
 

Mairi looked online about HELLP syndrome after being discharged home. It was quite frightening and made her realise how serious the situation had been.

Mairi looked online about HELLP syndrome after being discharged home. It was quite frightening and made her realise how serious the situation had been.

Age at interview: 36
Sex: Female
Age at diagnosis: 30
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Did you look anywhere else for that information?

Good old Dr Google. But it's quite a scary place when you go on it. If you type ‘HELLP [syndrome]’ in there, there's some horrendous things come up.

Mm mm. And why are they horrendous?

I think because you then realise that actually… the final point was I could have died. But at no point had that ever been explained – probably wouldn’t have been very useful at the time anyway, but I don’t think I ever realised how ill I was. And I remember we were speaking to my mum and dad and was going like, "Yeah, all's fine; yeah I have to stay in; my blood pressure's a bit high," and never at any point did we realise how ill I was. And then when I… I remember Googling and I got quite a shock when I Googled what are the possibilities, and how quickly it could change from one to the other. And probably very… the good thing was at no point was I ever aware of that in the hospital. 

It was all really just dead easy going and, which I suppose it was helpful at the time, but then I wanted to know when I came out what was this thing I'd had.

Mm mm. And was it mainly forums or did you find any high quality information about…?

No, it was just… I think I just typed it in, saw what was there, kind of read a few things and then I thought, 'I don’t think I want to know any more about this.' My mum had also done it and my mum had got quite upset actually, because she had Googled it when I told her what it was I had. And she…I remember her saying to me, "Do you realise how ill you were; you could have died from that," and I'm thinking, 'God what have you been reading?' and then I did have a look online and I thought, 'This isn't going to be helpful.'
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.
 

Stewart and his wife, Claire, requested a meeting at the hospital to talk about some aspects that they were unhappy with. The meeting also helped them process things a bit more.

Stewart and his wife, Claire, requested a meeting at the hospital to talk about some aspects that they were unhappy with. The meeting also helped them process things a bit more.

Age at interview: 38
Sex: Male
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Yeah there was a few aspects of her pregnancy and at the hospital that we weren't happy with.

OK 

That there was certain things in the child report that we were as well that we hadn’t been told about.

OK yeah sure

That we wanted to speak to the hospital about that.

OK 

So, we just got in contact to see Dr [Hospital Doctor] for an informal chat with him, it wasn’t kind of a knuckle wrap kind of. You know it was just for us to get answers about what we'd seen and hadn’t been told sort of thing.

And did you value that opportunity to informally engage with the hospital?

Yeah it was very important for us. There was obviously a few things that we wanted to get… wrap our head round as well that we obviously hadn’t known.

And then obviously try and help the hospital with things that they'd missed to make sure it didn’t happen again to anyone else.
 

Josie found it helpful to get information from her doctor about pregnancies going forward, but there wasn’t much focus on what had already happened. She also found it helpful to talk to a doula with a midwifery and nursing background.

Josie found it helpful to get information from her doctor about pregnancies going forward, but there wasn’t much focus on what had already happened. She also found it helpful to talk to a doula with a midwifery and nursing background.

Age at interview: 45
Sex: Female
Age at diagnosis: 39
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And were you ever given the opportunity to have any follow-up meetings with healthcare professionals?

I did go to see my consultant in the end, and I said I'd only probably met her once before. And you know we just had a quite interesting… it was a quite an interesting discussion but a lot of it was about what would happen if I was to want to become pregnant again, and there wasn’t a lot of talk about the experience actually. And I did get the impression that , again a nice lady, but that, you know but that it was very much like, "Well it all turned out OK actually didn’t it, so you know we won't worry about the fact that, you know that this happened and that happened." I sort of got that impression really. You know, yes I was fine and [son’s name], my son is absolutely fine, but you know it… yeah there wasn’t a lot of sort of reflection and looking back on the experience.

In fact the mess… I did actually have a really sort of valuable relationship with somebody who is a doula, or was a doula, and she came a few times, quite a few times to help at the beginning, and she'd become a doula after having been a neo-natal nurse and a midwife, and having dismissed the sort of… or not wanted to be that involved with the medical side of things was, you know more interested in kind of the practical and the spiritual you know, the emotional side of things and, but with this medical background.

And she was, she was the person that said to me, "Don’t worry about the breast milk, just you know, just hold him," you know and that was the best thing that anyone had ever… had sort of said to me up till then.
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