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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.'
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.
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.
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.
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. 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.
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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