Pre-eclampsia and high blood pressure in pregnancy
Partners, family and friends: impacts and experiences in relation to pre-eclampsia
We spoke to three partners of women who had developed pre-eclampsia or HELLP syndrome in their pregnancies: Michael, Stewart and Stephen. Women themselves also talked about how their partners, family members and friends were involved in their experiences. Most women talked about their partners being the main support throughout their pregnancies, births and recovery afterwards. For Janine, it was her mum who was her main source of support.
Partners, family members and close friends played varying roles through pregnancy and illness, including: talking about possible symptoms and signs; encouraging the woman to seek medical help; being there when the diagnosis was given; taking women to monitoring appointments and/or into hospital; visiting women whilst they stayed in hospital and/or taking in their personal belongings (e.g. clothes, toiletries); being there for the birth; looking after women as they recovered; and looking after babies who were born early or who had health problems.
Angela’s friend helped reassure her when she was struggling after the birth.
Angela’s friend helped reassure her when she was struggling after the birth.
Stephen needed time off work when his wife was admitted to hospital.
Stephen needed time off work when his wife was admitted to hospital.
Yeah, yeah you know I not… because obviously I was like not off work, not expecting to be on paternity leave; it was like just running into Christmas, so the general thought was at some point in the Christmas period I'll have… we'll have the baby and then I won't come back into the new year. And then so suddenly it was all action but I was ringing in saying, "I've got to go up to the hospital; pick Mairi up because she was unwell last night but…" and then you're ringing in like a bit later saying, "I'm not going to be in at all," or, "I won't be in tomorrow," and then you know. So, like obviously people are aware that this has been something that hasn’t necessarily been unplanned and all that. So, yeah I explained yeah quite freely actually.
I work with like 90% guys to be honest, and so I don’t think they necessarily had a great depth of knowledge about what it was, but you say, "Oh it's like pre-eclampsia." "Oh my sister had that," and you know it's the usual thing. So, yeah but I'm happy to share those things...
Sometimes partners, family or friends had voiced concerns about the woman’s health and encouraged her to seek medical help. Paige said one of her friends at university thought she had pre-eclampsia some time before she was officially diagnosed. Some of Hanna’s work colleagues suggested the same because of her swollen feet. Olivia and Josie’s partners were both medically trained and so sometimes checked their blood pressure to keep an eye on them.
However, most partners, family members and friends did not know much about pre-eclampsia. Michael said he had never heard of pre-eclampsia before, but the doctors explained it clearly after his partner was diagnosed. Stewart said that he thought some of the symptoms were quite normal in pregnancy and didn’t realise it was anything to be concerned by. He would have liked an information leaflet rather than being “left to go on different websites where information might differ”. Some of Paige’s family initially thought the symptoms she was experiencing were normal in pregnancy, although her mum pushed for her to call the hospital when things became worse.
Although Michael knew his wife had high blood pressure in her pregnancy, he wasn’t too worried about this at first as the test results didn’t seem too serious.
Although Michael knew his wife had high blood pressure in her pregnancy, he wasn’t too worried about this at first as the test results didn’t seem too serious.
I feel a little bit bad, but it wasn’t probably until the morning that she was diagnosed and then we had the baby a few hours later, so like I said there were four or five days where she started to look really quite uncomfortable. I still feel I had it in the back of my mind that this is probably to be expected. So although she’d gone into hospital five days beforehand or four days beforehand and they’d sort of done a few things. And they noticed some high blood pressure and a few other anomalies, she was, I was still sort of thinking at the back of my mind, well that’s probably to be expected, that’s fine. And the day before we had our baby she was in hospital again, and I think it was you know, she had a couple of things like, well they noticed the high blood pressure again, and they were deciding whether to put her on medication for that and I think they noticed a few things like some traces of protein in her urine. And a few other details like that. But still none of it, I’m not very medical at all. But a lot of these types of things sort of sounded quite normal. You know, I don’t know about protein in the urine. But I’m sort of thinking oh okay traces of protein in the urine, high blood pressure, yes, okay. That seems not fine, but you know, that doesn’t sound like an emergency yet.Through her own experiences, Josie found out that her mum probably had pre-eclampsia in the past.
Through her own experiences, Josie found out that her mum probably had pre-eclampsia in the past.
Information for partners, family and friends
It was important that women as well as their partners were kept up to date with information from their doctors and midwives, especially when in hospital. This included information about their diagnosis and how the situation was changing. Sometimes women were not able to take in the information, so partners took on the role of asking questions to understand what was happening. Stewart remembered the anaesthetist was very good at explaining what was happening the caesarean section procedure, which helped him feel calmer.
However, this wasn’t always the case. Hanna didn’t feel the hospital gave her husband enough information or answered his questions, which left him feeling “helpless”. There were some situations when women, their partners or family members thought information had been withheld to protect them. Stephen said that “the piece of the jigsaw that was missing, and I don’t know whether that’s deliberate …is how quickly you [Mairi] could have been a lot more poorly. That wasn’t obvious to me at least”. Janine’s mum “twigged” when something was wrong but “didn’t let on to me in case it made me more panicky, that my blood pressure would go up even more”.
Knowing that an emergency caesarean section was very likely, Samantha X and her husband had the chance to talk with a paediatrician beforehand. She found this really helpful for explaining how her baby was going to be looked after when born.
Knowing that an emergency caesarean section was very likely, Samantha X and her husband had the chance to talk with a paediatrician beforehand. She found this really helpful for explaining how her baby was going to be looked after when born.
Mairi felt that her doctors were not always very forthcoming with information. Her husband, Stephen, had to push for an answer at times.
Mairi felt that her doctors were not always very forthcoming with information. Her husband, Stephen, had to push for an answer at times.
Just to be as honest as possible especially if the patient's asking questions. Had it not been for Stephen really pushing the doctor on the Friday night, the day after, as to how ill I was… what were the expectations, I don’t know that we'd ever have been told any of that information but I distinctly remember him pushing to say, "Right, tell me what is wrong with my wife; tell me what the long term effects… is this long term, is it short term?" And actually if you knew… again it might just be my working in a way but I can manage if you tell me how long I'm going to be in this situation. And I know it's a bit of an unknown but if they were able to say to me, "This is what normally happens, and this is what we'd expect in you to happen, happen to you," then that’s easier to deal with than just having… being told nothing.
And it was that lack of information. I think looking back again they were probably waiting to see what was going to happen. But you know if they'd told us that they waiting to see what was going to happen, that would have been more beneficial than just not hearing anything.
Partners sometimes took on a bridging role to the wider family. As Stephen explained, “it not just you two… you’re going to have to then be able to relay and reflect ‘this is what’s happening and this is why this is happening’ [to parents and in-laws]”.
Being there for women at difficult times
The women we spoke to often said that their partners had been a great support, especially when they were frightened and upset. Olivia’s partner “had to coach me through every single contraction”. Samantha X said she and her partner tried to “be jolly” about the hospital stay and “make the best of things”. Stephen tried to “keep the spirits up” as his wife, Mairi, was having an epidural put in. But partners couldn’t go into the operating theatre with women who had a general anaesthetic for their caesarean sections. This was the case for Michael who remembers anxiously waiting down the hallway for news.
Betty’s husband tried to comfort her in hospital and keep her calm, particularly during the caesarean section.
Betty’s husband tried to comfort her in hospital and keep her calm, particularly during the caesarean section.
Yes, yes. He did ask about the blood pressure; what should it be. He kept a very close eye on it. He would answer a lot of the questions on my behalf and I'd correct him [laughs]. He didn’t actually look at the consent papers I don’t think, that was given to me which is right but equally I don’t think I was really in the right position to sort of digest it properly, but at the same time what options what are there? They can't… my husband shouldn’t be reading and signing on my behalf, and unless I didn’t want to go ahead with it there was little option other than to sign it.
In operating theatre I'm very thankful that he was allowed to be in the operation theatre; I don’t whether that’s standard but he made sure that I just focused on him and he kept me peaceful, rational, calm to the point where even when they cut me open and my son was delivered, I was still… my husband was still talking to me and I was just focusing on his words. Michael couldn’t stay in the operating theatre when his wife was under general anaesthetic. He was given some photographs of the baby.
Michael couldn’t stay in the operating theatre when his wife was under general anaesthetic. He was given some photographs of the baby.
And how long… where did you go during…?
I went back down the hallway to the preparation room that we’d been in for the previous four or five hours.
Okay and how long did you have to wait there?
It was probably, 20, 25 minutes and one of the doctors had come in and told me that everything was okay. He was a sweet old man, he’d offered to take a camera into the operating theatre to take some photos for the birth. So that was nice. So he came in, initially after may be 20 minutes and sort of said. “Everything seems to have gone okay.” And I think he brought me one photo. No he brought back my digital camera, that’s what he did. He brought back my digital camera so I got to have a look at a couple of photos of our boy on the back of the camera, and then, I think he went away again. And so I spent some time looking at those. He came back with a printed out photo of our boy. So I think they must have had another camera that they took a photo of, and then he went away again, and then he came back a third time. So this was probably getting close to 40 minutes after I’d left the operating room. He came 40 minutes later saying that there’s, the family down the hallway’s missing someone. So got to walk back down the hall way and went in to see my partner cuddling our baby boy.Mairi and her husband had little time to process what was happening before their son was born.
Mairi and her husband had little time to process what was happening before their son was born.
Often mother and/or baby needed specialist medical care. Babies born early or with health problems often went to a neonatal unit like SCBU (Special Care Baby Unit) or NICU (Neonatal Intensive Care Unit), and some women needed to go to Intensive Care Unit or High Dependence Unit after giving birth. This could mean being separated in different parts of the hospital or even in different hospitals, making it difficult to spend time together. Samantha X encouraged her husband to spend time with their baby as she didn’t want her daughter to be alone. Mothers sometimes weren’t able to see their baby for a few hours or even days because they were themselves so unwell. Paige was upset she couldn’t see her baby but she was glad other members of her family spent some time with her daughter in SCBU: “at least with them going to see her, she knew she had people there for her”. As well as bonding with the baby themselves, partners and other family members sometimes brought photos and videos of the baby to the woman so she could see.
Michael recalled his emotions in the days after his son was born. It was difficult to bond initially with lots of medical equipment attached to the baby.
Michael recalled his emotions in the days after his son was born. It was difficult to bond initially with lots of medical equipment attached to the baby.
Whilst recovering in hospital, Hanna’s mum helped her bond with the baby.
Whilst recovering in hospital, Hanna’s mum helped her bond with the baby.
I think I would have found it difficult had it not been for my mum being there encouraging me, putting her in my arms every day. Every morning, she would come into the ward, as if she was coming to work, my mum would be there, eight o’clock in the morning and they were saying, “No, no, it’s not time for visitation.” She’d say, “I need to come in.” So they’ve got used to her and they would let her in [laughs] and she’d be there with her flask of hot tea and she’d come in and she would say, “How are you?” And I would say, “Fine.” And before I even finished, I’m fine, she’s picking up the little one and she used to change her, sponge her and massage her. That’s what I remember. She used to massage her every morning, massage her with oil all over. She says it’s good for the baby’s limbs to stretch and then, when she’s wrapped her up, she’d put her in my arms and say, right, there you go. Helen X found it helpful when her husband used an analogy that there was not only one ‘correct’ way to look after their baby and so she need not worry too much.
Helen X found it helpful when her husband used an analogy that there was not only one ‘correct’ way to look after their baby and so she need not worry too much.
Partners were themselves often very worried and shocked by what was happening. Julie felt “it was frightening for my husband, so he had to sit back and just watch it all unfold”. Paige’s partner broke down in the operating theatre and thought he might have to leave during operation; after a pep talk, he was able to stay. Stewart pointed out that “there’s no class or anything that the dads can go along and tell their worries or troubles that they’ve got after” which would be an equivalent to mother-and-baby groups.
Some women had other children too who were affected by the woman being unwell with high blood pressure problems in pregnancy. Kay’s 14 year old daughter had worried she might lose both her mum and hew new sibling.
Kay had to keep her distance from her stepchildren as picking up a bug was a serious risk to her premature baby. She held a family celebration when her baby daughter was home from hospital.
Kay had to keep her distance from her stepchildren as picking up a bug was a serious risk to her premature baby. She held a family celebration when her baby daughter was home from hospital.
So, the first month we didn’t see his children, and after a month she was still very ill but I don’t think it was quite as worrying, so the kids got in to see her then.
It had an impact on them. Usually when a baby's born there's a big celebration, you know everybody's happy. Imogen came along and there wasn’t that. It wasn’t a happy occasion, it was a worrying occasion. In the August we had a party for her – a naming day ceremony –not for… it wasn’t for Imogen it was for everybody else. 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 because obviously nobody had seen her because she was so fragile. And for us, to actually celebrate that, you know we've had a baby. And not only did we have a baby, we had a baby that really wasn’t given good odds and is alive and kicking. She was still on oxygen and everything, but… but we needed that.Samantha X talked about the impact on her husband at the time. She thought that they have coped with it in slightly different ways from one another.
Samantha X talked about the impact on her husband at the time. She thought that they have coped with it in slightly different ways from one another.
I actually think, although I went through it all, and our daughter went through it all being in hospital, I actually think in some ways it was harder on him, because he just, he just tried to do everything that he could to, you know, try and make it as easy an experience as possible. And he was brilliant at the time. I remember about two days after our daughter was born. He said to me, “I think I need to have a really, really big cry.” And he’s never actually had that. And I think as time’s gone on he doesn’t really think about it any more whereas I do. So when I sort of say to him, what happened here, here and here its always like it’s a bit of an inconvenience to him, because he sort of things, well why are you thinking about that? You know, why don’t you just move on and think about, you know, how she is now and that sort of thing.
There were some practical difficulties too. Often there was nowhere for partners to rest or sleep. Dominie’s husband stayed most of the time she was in hospital as the car park charges meant it wasn’t worth him coming and going. He had to sleep on a reclining chair and sometimes needed to move if the midwife needed to get to equipment behind the chair. Mairi remembered her husband being told off once for lying on the bed with her. Stephen said the male toilet was beyond the maternity unit so “you have to go out and then buzz to get back in”, which was noisy and required a member of staff to let him back in.
Olivia chose the hospital she gave birth in because it had accommodation for partners. However, it was unavailable during her stay and she was devastated when her husband had to leave.
Olivia chose the hospital she gave birth in because it had accommodation for partners. However, it was unavailable during her stay and she was devastated when her husband had to leave.
I was just like… oh and I tried to go to the toilet for the first time and I was sat there on the toilet and the midwife came in and said, "Yeah your husband needs to leave now," and I was like, "He's not going anywhere," and they were like, "Look, you know rules are rules, he's got to leave."
And he left apologising. I was still on the toilet trying to use the toilet. I've got a screaming new-born in the other room. I just thought, 'I'm in hell, I'm in actual hell right now.' And I phoned my husband both nights crying, begging him to come and get me from the hospital. "They're insane, get me out of here," and he was probably thinking, 'You're the insane one, you're staying put,' you know.
A few people were able to make special work arrangements. Michael had some half-days and Hanna's husband took annual leave. After their baby died following complications from severe pre-eclampsia, Munirah’s husband spent some time working from home so he could be around more. Julie’s husband would get up very early in the morning before work and do tasks around the house so that she didn’t have to worry about them.
Kate’s husband continued to go to work, alongside juggling lots of other tasks.
Kate’s husband continued to go to work, alongside juggling lots of other tasks.
Well he was brilliant, actually. You don’t know what people are made of until they’re put in a position like that. He was still going to work. Still visiting the baby in neonatal. Still coming over to, to see me in Intensive Care and High Dependency, you know, bringing me books and sweets and things that I’d never eat, and never read. But it was the thought that counted, you know. He did all the practical stuff. You know, he cancelled all my appointments. He phoned people. He let people know. He just rallied people together and actually his parents were amazing, because they cleaned the house. So I got back, you know, the vacuuming had been done, and well there was no washing up in the sink to come home to, and… Yes. Its what you need.Aileen’s husband was self-employed. This gave him some flexibility but it was still tricky, especially with childcare.
Aileen’s husband was self-employed. This gave him some flexibility but it was still tricky, especially with childcare.
And as well she's a bit, 'Why are we in here?' Yeah, so it was difficult with the logistics. It was more difficult, it was… I think it was more difficult for my husband because he was doing everything basically.
I was in hospital just caring for my son who was on special care, whilst my husband is caring for my daughter, doing the pick-ups, thinking ahead of driving to the hospital, or picking up my daughter from nursery and all that, and he's obviously in charge of the house as well.
So, what… yeah so it was difficult. And then when I got discharged that was… became a bit more difficult – easier in some ways that I was sleeping in my own bed but knowing that I'm 30 miles away from my son.Kay hadn’t felt ready to talk about what had happened, but she thought it was important for family members to be told when the situation is/was very serious.
Kay hadn’t felt ready to talk about what had happened, but she thought it was important for family members to be told when the situation is/was very serious.
And I think that’s maybe where I went wrong. I think I maybe should have sat down and said to people, "This is how I'm feeling." With my mum… my mum casts up at me that I didn’t let her come and visit me. She's not a clue, not a clue. I was lying there fighting for my life Mum, I really couldn’t be bothered if I'm honest. She… she… Imogen was born on a Monday and my mum gets annoyed I didn’t let her see her till the Tuesday. It was like, "Mum I hadn’t… I hadn’t seen my baby; I'm not going to let you see my baby before me," you know. So, I think, you know maybe I should have sat, or someone should have sat my mum down and spoke to her and said, "Look,"…you know I don’t think she really realised she might lose me. I don’t think that had entered into her head. You know she just thought I, you know she didn’t realise actually I wasn’t able for a visitor you know. But when somebody comes to visit you, you try and sit up and you know, I just couldn’t do it.Samantha X noticed that other people were sometimes unsure about how to react to the news that her baby had been born prematurely and needed to stay in hospital.
Samantha X noticed that other people were sometimes unsure about how to react to the news that her baby had been born prematurely and needed to stay in hospital.
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