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Pre-eclampsia and high blood pressure in pregnancy

Support during and after pre-eclampsia

Support—practical and emotional—was vital during and after pre-eclampsia or HELLP syndrome for the people we interviewed. Examples were wide ranging, and included: cancelling appointments on behalf of women staying in hospital; bringing in clothes, toiletries, food and books for women in hospital; driving women to and from the hospital for appointments or to visit babies staying there (especially if the woman was still unwell and/or had a caesarean section); cleaning the house; and breastfeeding help. 

Support was received from a range of people. A key source was partners and family members. Hanna’s mum helped her bond with her baby. Paige’s family helped her get to and from hospital when visiting her baby and going to GP appointments. Angela had a close friend who reminded her “don’t be hard on yourself”. Emma found her local children’s centre really good – they gave advice with breastfeeding and she met other mums, including some with similar experiences of pre-eclampsia. Munirah spent a lot of time with her family after her baby died and she found going back to work part-time helped, as she could “just have a normal conversation” with colleagues.
 

Kate had support from her mum, friends and partner. Writing an email about her experiences was the easiest way to let friends know what had happened to her.

Kate had support from her mum, friends and partner. Writing an email about her experiences was the easiest way to let friends know what had happened to her.

Age at interview: 35
Sex: Female
Age at diagnosis: 34
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My mum came to stay which was a great help, because she did the night shifts for me. Which was just, Oh thank you so much. Mothers are wonderful people. You know, all past problems were thrown out of the window and then you were grateful for every bit of help, and friends offered to come round with the duster, you know. The friends started coming round and it was wonderful. And I relive the story, and I wrote an e-mail to people. It was mainly for me. I needed to get it out of here and onto paper, and I thought right I’m going to do a quick edit and then send it, and I thought right I’ve done it. And then wait for the replies to come, and the people said, “That’s the worst birth story I’ve ever heard.” [Laughs]. But it was helpful for me. It just, got it out of my head. And I think my partner was worried that I’d crash at some point, because I was on such a high, the adrenalin was kicking in. I had wonderful new baby. I was out of that institution. I was free to do what I wanted to do. The pain had gone. And everything was fabulous again, after all the trauma.
Difficulties

However, partners and family members sometimes found it difficult to know how to support women with pre-eclampsia. Partners sometimes felt they had to put their own emotions to one side in order to care for the woman and baby. Stewart said there are times when “you say the wrong thing and then you'll get your head bitten off”. He pointed out that while there are support groups for women, including those specifically about pre-eclampsia and being new mums, he didn’t know of any similar support groups for dads. Some women felt their family, friends and work colleagues struggled to know what to do or say. Samantha X thought some people distanced themselves from her because they were unsure about how to act or whether to ask about her daughter’s health.

Women had different support needs. While some said that they had enough with their partner, family and friends to support them, others felt that there should be more support available. Betty didn’t feel a need for support after giving birth as it felt the experience was finished, but she would have liked more help regarding having a premature baby. Julie found it “very bizarre that you can go through such a massive thing” and then be discharged home with potentially no practical or emotional support. Emma thought it would be good to offer the option of seeing a counsellor in the first few months after having had pre-eclampsia.
 

Angela had recently joined an online forum. While her midwife initially told her about a support group, it wasn’t the right time for her to engage then and she preferred one-to-one counselling.

Angela had recently joined an online forum. While her midwife initially told her about a support group, it wasn’t the right time for her to engage then and she preferred one-to-one counselling.

Age at interview: 36
Sex: Female
Age at diagnosis: 34
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And that’s just really nice where you just read each other's stories, and it just can be quite helpful, therapeutic to know. For a long time after you give birth and it doesn’t go to plan kind of thing and all this, you get quite envious of people who have normal births; quite like it's funny, it's …you don’t want to hear about them, you don’t want to hear about…their birth was fine, you know you're like you do a lot of 'Why me, why me?' You can be… yeah it's quite… it's quite funny. So, those groups were really good in the fact that there were other people out there who say exactly the same as you - 'Why me?' 'Aah de de de had this great birth.' You get a lot with people who say, "Oh you should be over it by now." This is what they say in these groups, and it's so nice that I don’t think that they don’t think that, each other doesn’t think that so it's OK. And they're very supportive.

There was… again when it was right in the early days I remember this midwife ringing and leaving this message saying, "Oh and just to let you know here's the details of this pre-eclampsia group; here's the phone number and that," and it was just like, [click] and that was it, I just… I didn’t have anything in me at that point; no-one… I felt like I had to fix myself. I was the one who had to go and seek medical help. I had to go and seek psychological help. I had to pay for it all, which is fine but I did… you know it was… and I was… yeah so I saw the counsellor about eight, a good eight months I think to the point where I wanted to come off the medication, the anti-depressants, everything, with her support and did it all kind of thing.

And finished it even though I do get days where I would love to still be seeing her. But I feel that she was there for that reason, and it's finished and I think you can't always drag everything on with you.
Support gained through sharing/shared experiences

While many women found it helpful to talk about their experiences, it was hard sharing these with mums who had had a ‘normal’ experience. Hanna avoided going to mother-baby groups as she was worried someone might ask about her pregnancy and birth experiences.
 

Betty went to antenatal classes after having her baby as she wanted the social side, but she had to hold back on sharing her experiences.

Betty went to antenatal classes after having her baby as she wanted the social side, but she had to hold back on sharing her experiences.

Age at interview: 38
Sex: Female
Age at diagnosis: 37
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We delivered before we started our NCT class [laughs], so we were thinking on, you know, do we just not go but at the same time we still want support in the community from a peer group, and so we still attended the classes but obviously we'd already delivered which was quite a strange scenario.

And you know, as you'd expect in NCT all the mothers have an ideal birth plan and they all want to give birth in a pool and they're going to do hypno-birthing and it's all very mother earth. And so we just found we had to bite our tongue because… or just reveal very little about our birth experience because we didn’t want to scare anyone.

Because yes if you heard it, it could be quite traumatising.
In contrast, speaking to women who also had pre-eclampsia could be reassuring. Angela went online and found it “therapeutic” to know that others had difficult births too and that she was not alone. Sometimes it was an unexpected discovery that someone else had experience of pre-eclampsia or HELLP syndrome. Helen X said that when she tells someone about her experiences, others’ stories of premature babies seem to “come out of the woodwork like nothing else”. However, hearing other people’s experiences could also be upsetting and triggering for women. Julie said she wouldn’t have coped hearing others’ stories or talking about her own for about two years after she had pre-eclampsia.

Some women had participated in groups focused around shared experiences of pre-eclampsia and/or premature babies, either online or face-to-face. While Paige was grateful for the support from her family, she felt that sometimes it was better to talk online about the emotional impact. Some women had made lasting friendships with others they met with similar experiences through support groups.
 

Tracey was initially very reluctant to go to mother-baby groups. However, she made some good friends and they shared the difficulties of motherhood.

Tracey was initially very reluctant to go to mother-baby groups. However, she made some good friends and they shared the difficulties of motherhood.

Age at interview: 39
Sex: Female
Age at diagnosis: 29
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And then I did some post-baby group then which was just the worst thing I ever wanted to do; I'm not a coffee morning type of person – swapping baby stories. But I did go and it was actually the best thing I did do, just in the group of women that I met and I still see to this day, even though I moved away, yeah I did click with some of them, but she was still, you know the tiniest baby yeah.

How was the mother and baby group so helpful?

Well once I went, and I hated it and I said I'm never going back, but my best friend told me that I would be going back, and it was definitely more for my mental health than socialising a child. So I was lucky in the fact that the group of women that were there that, you know were very… very nice and we did just bond but it got me out the house or else I just would have sat in and not did anything, because I didn’t have a group of friends; I'd worked and lived in different places, so I didn’t have a social network at all, so you are sort of stuck at home all of a sudden with baby; not seeing any adults, and that’s really important actually to find someone to talk to and just have a cup of tea with and just say, "God, this is shit." Yeah, but you know and what I didn’t want was people, you know take… feeling pity and feeling sorry for me; that was something else I didn’t want. So, taking myself away from that limelight meant that I didn’t get the questions and, because I couldn’t explain the answers - I don’t know why she was early, I don’t know why she's so small. So that I tried to hide from the world quite a bit and you do become quite isolated.
 

Munirah’s unborn baby died as a result of severe pre-eclampsia complications. She knew about a stillbirth charity that held face-to-face meetings, but prefers using online support for bereaved parents.

Munirah’s unborn baby died as a result of severe pre-eclampsia complications. She knew about a stillbirth charity that held face-to-face meetings, but prefers using online support for bereaved parents.

Age at interview: 27
Sex: Female
Age at diagnosis: 27
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And you were given the opportunity to meet with a bereavement midwife?

Yeah, yeah.

How was that?

That was OK. That went kind… we had kind of one session with her and she said she doesn’t do a huge amount of kind of counselling as such. She would be able to kind of support us in… if we needed help she would tell us where we could go and what we could do kind of thing. So suggested getting in touch with SANDS, and when I went to work and I saw ocu health, even the lady there suggested that I get in touch with SANDS. And I did and I had a chat with them on the phone and they said there was kind of groups you could go and meet other parents who’ve been through similar things and I just kind of felt that wasn’t kind of the right time kind of for me.

It was… but on Facebook-, SANDS said they’ve got a Facebook page, and then there's Action on Pre-eclampsia Facebook page, and there's-. And I kind of liked or joined them or whatever it is, and then I was able to talk-, to kind of talk to people who’ve been through similar experiences. And it was Child Loss Awareness Week kind of last week, or the week before, and we managed to-, there was just lots of people posting stuff on there so it was kind of like people commenting and talking to each other about their experience of what had happened.

So, actually that was quite nice in the sense of I'm not completely alone because when everything had happened to me I didn’t know anyone else who'd been through what I'd been through, or kind of like with my mum she had pre-eclampsia but… and I know it was bad and the fact that they… she almost lost her life, but it was just the two of us. Like, I know lots of people; I've got over… over 50 cousins and no-one's been through that. And I've got a huge family; I've got lots of friends and things, and I've met loads of people through school, college, university, work. I used to be a locum so I've met loads of people and I've never met anybody who'd been through it so I kind of felt really alone.

But then looking at this Facebook group because I actually know that I'm not alone, there's lots more people who have been through it. And on the SANDS one particularly people have lost their babies through lots of other things; but then on the pre-eclampsia one then there was people who have lost their babies specifically through pre-eclampsia so it kind of made me feel like I'm not quite as alone as I thought I was.

And from after everything had happened, we talked to family and friends and they were like, "Oh, we know such and such and we know someone whose been through something similar to that and like we can, you know, get you in touch with that person if you want to talk to them." And it's horrible for someone to go through something but then knowing that someone else has been through it kind of doesn’t make it seem quite as ‘why was it only me like?’ Like ‘why did it happen?’ and I wish it wouldn’t happen, but it does happen.
Not everyone wanted to talk about their experiences or felt able to do so. Lyndsey remembered the other mums talking about their birth experiences at the end of a baby massage class: “I didn’t want to really want to tell loads of people… I didn’t want them to think that I was trying to make my experience more worse than theirs”. Julie explained: “I’m not one of them that would want to sit there and talk, especially not at the beginning. I don’t think that would-, well I wouldn’t have gone”. Kay held back from telling others how ill she was and her feelings afterwards. She knew about a premature baby support group but didn’t want to go at first because she was worried the other parents would have their babies with them whilst hers was still in hospital.

With time, most of the women we spoke to became more comfortable talking about their experiences and found it helpful. After initial reluctance, Kay found it really helpful being part of a premature baby support group: “it was a support group for people who had had pre-eclampsia too because the majority of folk who have babies early it is pre-eclampsia unfortunately”. Julie said she now felt in a place where she would be okay discussing it and would like to offer reassurance to other women in the situation she had once been in. Tracey had pre-eclampsia 11 years ago and thought, with hindsight, she should have sought out more support.

Some women were also keen to share by giving support to others who might or have gone through pre-eclampsia. As Julie explained, “if people can be educated by it [my experiences] and learn from it, then why hide from it”. Lyndsey appreciated being able to give support to others through an online forum, including sharing tips such as taking a lipbalm into SCBU (Special Care Baby Unit) as she found the air dry.
 

Lyndsey mostly kept her experiences to herself. She talked to one friend who offered to come visit her and her baby in hospital.

Lyndsey mostly kept her experiences to herself. She talked to one friend who offered to come visit her and her baby in hospital.

Age at interview: 39
Sex: Female
Age at diagnosis: 34
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Friends, I didn’t really tell anyone anything what was going on really apart from one friend, so we sort of kept in touch via Facebook messenger and text and things and she's like, you know, "If you want me to come and see you," and I do wish I'd let her come and see me you know because lots of people did want to see us and things… it was like… but it wasn’t… it wasn’t like when everyone gets all their visitors after they’ve had a baby and everything's wonderful and great and I just want to keep everyone sort of away in a way just… everyone can come and see me once we're home and everything's fine you know but I didn’t want people's lasting memory of Thomas to be, you know in a little box with a tube on his face. But not… I think when it's… actually Special Care they only let family in anyway; I don’t think they always let friends in so. So, yeah so… so yeah it was… it felt quite a lonely time but that’s probably of my own choosing in a way; you know I just wanted everything to be better and then everyone could come and see me when we were both home so.
 

Kay met people through a premature baby support group, some of whom have had experiences similar to her own.

Kay met people through a premature baby support group, some of whom have had experiences similar to her own.

Age at interview: 42
Sex: Female
Age at diagnosis: 38
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And people, other people at the group, they had young babies but they didn’t have the same complications. And I realised quickly there's a difference between having a prem baby and having a micro-prem baby – there is a difference. You can have a prem baby and it's four pound odd and it has nothing, no serious impact, but when you have a baby under two pounds you're going a whole different…a whole different kettle of fish, it's completely different.

And so there's not many that come along as small as Imogen. But when they come on, because at the hospital…the hospital has this group; it's got an online page and the consultants are a member of it too, the paediatrician consultants are a member and a lot of the nurses are members of it. And it's good because we post before and now pictures – then and now. And also we , we speak to other mums who may come through and they go, 'My baby's blah blah blah,' it's like you know what, 'We're there for you; if you need a coffee; you just need somebody to talk to, believe me we have been there.'
Emotional support from health professionals

In addition to providing medical care and often information, health professionals were sometimes also an important source of emotional and practical support. Some women and partners remembered individual midwives and/or neonatal nurses in particular who had been supportive and caring. Angela said the nurses in SCBU involved her and her husband, and were “generally just kind, nice, attentive”. Others helped with things like learning how to breastfeed and change nappies. Helen X said this practical support made it easier when it was time to take her baby home.

However, not everyone received emotional support from health professionals. While Julie X felt the medical care she received was “absolutely second to none”, she would have liked more time to “talk things through” with someone. Tracey was frightened in the run up to giving birth and then felt very alone afterwards. She wished someone had been there to offer her reassurance: “I didn’t actually care who it was; it could have been the tea lady for all I care – it was somebody to hold my hand”. Often it was thought that a lack of practical and emotional support from health professionals was because they were very busy and had time constraints. Angela thought there should be more follow-up from midwives after discharge but that “they can't. I expect they would love to but they don’t have the capacity to which is a crying shame”.
 

Tracey was grateful for the medical care given to her baby, but thought there should be emotional support for new mums too.

Tracey was grateful for the medical care given to her baby, but thought there should be emotional support for new mums too.

Age at interview: 39
Sex: Female
Age at diagnosis: 29
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Do you think the family and the healthcare professionals you were interacting with appreciated that how upset you were and…?

No

…how difficult it was?

No. And they were brilliant, you know they knew what they were doing with her and they had a lot of babies to care for, and I appreciate that, but you know it's a hard job, hard shifts, long shifts and, you know it's hot and you know it's binging and bonging all over the place and, you know you’ve got babies' lives in your hands and, you know you're not really there to give the mums a cuddle, but someone should have been; someone should have been there to explain what had happened and what was happening at the time, you know rather than just being sent home and you start your day again the next day. It is a shock going from a day at work to then the next day just being… 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; you can't get your head round that. It's mad. It's totally life changing actually.
Counselling

Some women had counselling, either through a referral from health professionals or privately. A few people had been offered counselling but decided not to pursue it, as it wasn’t the right time or approach for them. Kate felt the support from her family and friends was enough. Julie had a friend who is a clinical psychologist and helped her with “working through it”.
 

Angela was prescribed anxiety medication for her panic attacks. She thought an NHS counselling referral would be a long wait, so she arranged to see one privately.

Angela was prescribed anxiety medication for her panic attacks. She thought an NHS counselling referral would be a long wait, so she arranged to see one privately.

Age at interview: 36
Sex: Female
Age at diagnosis: 34
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So, after… it must have been after two/three weeks after delivery; it must be actually even two I went to our GP and she did a postnatal depression screen. And where I remember like ticking the… because there was no way I was going to harm her; if anything it was… I was… she was… I'd look after… you know she was the one thing that had to be looked after. It was the anxious ones I didn’t realise I was ticking until she looked at it and she said, "That scored really quite high, how about we try you on an anti-depressant, citalopram, for your anxiety?" So, I was like, "OK," and then I remember it was just ten milligrams she said we'll start slowly. And then on the… I took it the next day, and I was staying at my mums for a couple of days and it was horrific. The anxiety levels had gone pff right up to the point I was… you could pull me off the ceiling.

Very panicky; kept getting panic attacks; was turning to things on the internet, you know that you could do deep breathing, you know anything; things that would tell you it's fine, you're not going to die, this is what it is.

And it gradually, over the weeks, it slowly all started calming down. But in the meantime I'd had a lot of midwife support and health visitors and things, and they'd said, you know we can refer you to a counsellor but I just knew that would be weeks and weeks and weeks.

So, within a week or so I'd sourced it myself privately. I needed… all I wanted to do is feel better, and I just felt awful, absolutely awful. 
 

Samantha X thought it would have been good for her to talk to someone about what happened to her.

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Samantha X thought it would have been good for her to talk to someone about what happened to her.

Age at interview: 32
Sex: Female
Age at diagnosis: 31
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I think in hindsight I wish that I’d gone back to talk to someone about what had happened. Not necessarily the issues of our daughter being in special care, but what happened to me. And I think it would have been good if there’d been some sort of group that I could have gone to of other mothers that had been through something similar. There seems to be lots of help for sort of parents who have got children who are poorly. But there doesn’t seem to be that much discussion about if you’ve been through a difficult birth experience, and whilst I had my NCT postnatal group that I spoke with, that was just one, one week out of sort of eight, and then we sort of went on and we were talking about parenting stuff and things like that. And I think yes, in hindsight I would have liked to have been able to talk more about what had happened. Not necessarily to get any real resolution on it, because I understood exactly what had happened, but just to talk about it. And to know that there were other people out there who’d been through difficult experiences.
 

The focus of Paige’s follow-up appointments was on physical symptoms and medication. She’s now considering counselling to help as she’s finding it particularly difficult being apart from her daughter.

The focus of Paige’s follow-up appointments was on physical symptoms and medication. She’s now considering counselling to help as she’s finding it particularly difficult being apart from her daughter.

Age at interview: 20
Sex: Female
Age at diagnosis: 19
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And have you been offered any support for the psychological impact of…?

Not really. No-one's mentioned it. Even at my six week check-up at my doctors, they didn’t really bring up my birth; it was more check my blood pressure, do my medications need tweaking? No, not really and then it was, "OK see you next week," sort of thing. So, there has been times where I've thought, 'Right, do I need to?' and at the moment I'm OK with it apart from the leaving part. But if it gets any worse then I probably would go and seek further help just to… for my own sanity really, just… even if it's just one or two sessions just to get everything out the way with. But at the moment I don’t think I'd benefit from it but I would say to others, "If you feel you would then I would try and push for it."
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