A-Z

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.

Age at interview: 36
Sex: Female
Age at diagnosis: 34
SHOW TEXT VERSION
PRINT TRANSCRIPT
Yeah and I…and I remember my friend saying to me, "I need you to know, you know that…" and she goes, "I don’t want you to be hard on yourself because I know what your like." She was like, "But you can see what happened, you know this, that and the other, and this is, you know; don’t be hard on yourself, just…" and that’s what I needed and that’s why I needed like the counsellor and the therapist – she was brilliant. She was, you know just kept reassuring me. It was funny, as at the time I just wanted to be surrounded by women because they were just kind and just really like, "It's OK, it's hard, no-one will tell you how hard it is." It's kind of like until you’ve been through even having a baby that’s when you know. And yeah. So, you know a lot of people supporting and saying just, "Be easy on yourself, be kind; be kind to yourself." And I was… I'm such a strong person. I've got to be strong; I've got to be strong.
 

Stephen needed time off work when his wife was admitted to hospital.

Stephen needed time off work when his wife was admitted to hospital.

Age at interview: 41
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
And did you discuss it at work?

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...
Partners, family and friends having concerns

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.

Age at interview: 32
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
What was your first inkling that something was sort of medically going wrong?

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.
Claire and Munirah both told their midwives early on that they have a family history of high blood pressure problems in pregnancy. A few women whose female relatives (mums, sisters or aunties) had pre-eclampsia had heard quite a lot about it. Mairi’s mum had pre-eclampsia in the past and so “she was always on edge as to whether I was looking puffy”. Kay’s sister had pre-eclampsia late in her pregnancy and it seemingly made little difference: “they put her on blood pressure medication and they took the baby out – ta da”. One of Paige’s family friends had pre-eclampsia and warned her that there’s a tendency for blood pressure to spike again a few days after giving birth.
 

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.

Age at interview: 45
Sex: Female
Age at diagnosis: 39
SHOW TEXT VERSION
PRINT TRANSCRIPT
I mean one interesting thing that I did discover on reading is this hereditary issue you know, that my mum… my mum, you know sort of suddenly said, "Oh well maybe I had pre-eclampsia when you were a baby actually," you know, she said, "But it was called something else then," and I, you know and I hadn’t sort of connected that up and stuff like that and, you know so I hadn’t sort of realised that I might be a sort of more of a high risk person because I understand that, you know you can be a bit more high risk if your female relatives have also had it.
Stewart felt that partners can be an important source of information for doctors and midwives in understanding a pregnant woman’s symptoms, providing they know what to look out for. He said that his wife “plays everything down” and so would sometimes not speak up about how much physical discomfort she was in. Although it can be hard for partners and family to pick up the signs. Kay said she tried to hide from her partner how ill she was and how much of a toll it was taking on her.

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.

Age at interview: 32
Sex: Female
Age at diagnosis: 31
SHOW TEXT VERSION
PRINT TRANSCRIPT
They were very good actually. They, they told us about, you know, obviously they can’t speak in specifics until a baby’s born, but they, they gave us information about a baby born at 29 weeks gestation, you know, the main concern that we have is for the lungs. I’d had steroids already to already to address, you know, to certainly try and address that issue. They explained to us about some of the likely medication and machinery that, that you’d probably have to go on and you know, how they would sort of deal, deal with the baby in theatre and then take her away and that sort of thing. So, and actually that was really good, because when, I didn’t see her for quite a while, because they wouldn’t let me off of the delivery suite. But when my husband went upstairs and they were using terms like, ‘oh this is the CPAP machine’, he knew what that was and why they were using it. He already knew that and although it was still a big shock for him to see, you know, our daughter in that sort of situation, he did understand what everything was, and why it was there. So I’m really glad that we had someone come and speak to us actually, because, I would, I think otherwise I would have just been completely freaked out and you know, what’s going on, sort of thing. But because they’d talked to us about what you know, a baby at 29 weeks gestations is generally what their condition generally is, it wasn’t such a shock.
 

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.

Age at interview: 36
Sex: Female
Age at diagnosis: 30
SHOW TEXT VERSION
PRINT TRANSCRIPT
And have you got any messages for healthcare professionals caring for patients with pre-eclampsia or HELLP?

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.
Women who had been severely ill sometimes could not remember everything that happened whilst they were unwell. Some found it helpful to try and piece it together through things their partners remembered and their medical notes. Claire thought it was good when doctors and midwives explained things to her husband: “whether they were aware maybe I wasn’t taking it in properly as well, but they were always at pains to make sure he understood”. Hanna said she remembered bits and some things “from what my husband tells me”.

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.

Age at interview: 38
Sex: Female
Age at diagnosis: 37
SHOW TEXT VERSION
PRINT TRANSCRIPT
And what was the role of your husband in all this? So, it must be a very challenging situation?

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.

Age at interview: 32
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
When I left the room there seemed to be at least ten people in there, and I got the impression that you know, one or two more might be coming in as well, so I didn’t, that didn’t panic me, but I was sort of surprised that we needed to have that many doctors or medical staff in there for the actual operation.

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.

Age at interview: 36
Sex: Female
Age at diagnosis: 30
SHOW TEXT VERSION
PRINT TRANSCRIPT
Alex came out and they gave him straight-, they wanted to give him to me but they gave-, I said, “No, give him to Stephen”; I desperately-, I was worried they were going to start thinking I didn’t want him and I was desperate to let them know that I did want him, but because of the way my hands were sitting-. And I remember them giving him to Stephen and the two of us were just really ecstatic. It's funny because we didn’t cry, and I remember we both had a conversation, “Do you think we should we have cried at that?"” and I think just-, at the whole kind of emotion of what was going on, I think we were just relieved it was-, that he was there; he was healthy, he was happy. They said he was perfect; there was not one thing wrong with him. So actually by that point we weren't that-, we weren't that fussed. It was all-, it was quite nice after that.
In the later stages of illness, decisions could happen very quickly. Several women had to call or text in a hurry to let their partner know the baby would need to be born soon. Samantha X’s partner was delayed because of traffic. Josie remembers her husband arriving whilst she was in the operating theatre: “I don’t think they were waiting actually; I think they would have started …things were looking very bad at the time”. Kelly’s partner missed the birth as he wasn’t able to get there in time.

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.

Age at interview: 32
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Certainly as soon as he was born, the first few days, I probably felt quite strange and odd. When I was looking at him, I thought, oh this is a gorgeous baby, but it wasn’t really hitting me that it was my baby. So I’ve thought about that a little bit. I’m not really sure what it is. Was it the shock of suddenly waking up one morning to get a text message from my partner, saying that we’re having a baby? Was it the fact that I couldn’t be in there for the birth? I’ve thought about that quite a bit, because I was thinking, oh I don’t know if that’s significant or not, but you know, beforehand I hadn’t given the birth a great deal of thought, but I’d always sort of visioned that, you know, I’d be in with my partner, helping her, and then the baby would pop out and there are the three of us would be together. So what actually happened in reality was quite different. I was waiting in a room down the hallway, for a doctor to come and tell me it had happened. So, I don’t know if that was sort of part of it. Yes. And then there was also the feeling, of like I described earlier when you were in the neonatal area, and you’re picking up a baby that’s got lots of wires connected to it. You just sort of feel like, I don’t know, you’re a little bit restricted or… It was only once we really got to bring him home, and then just the shock had sort of worn off, well not worn off, but you know, we got over that, and then it was, a lot more enjoyable, once we’d got to bring him home.
 

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.

Age at interview: 39
Sex: Female
Age at diagnosis: 37
SHOW TEXT VERSION
PRINT TRANSCRIPT
How did you find bonding with her after after the initial couple of days?

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.

Age at interview: 31
Sex: Female
Age at diagnosis: 31
SHOW TEXT VERSION
PRINT TRANSCRIPT
And, but then Michael was fabulous, amazing. And he said to me, “You know, I think having a kid, like, its like a barbecue, everyone has an opinion on how to cook a barbecue, you know. But pretty much, most of the time, everyone can cook a sausage, even if someone said, do it like this or do it like that.” And I was like he’s so right, it is. Because you could hear all the nurses on the neonatal unit saying to each, even they didn’t agree on the right way to do things, and so we were there sort of feeling all thumbs, because we’d never changed a nappy before and every nurse told us a different way to do it and all the rest of it. And, and that to me was stressful, because I felt like I was doing it wrong, you know, and that sort of thing, and when Michael said that, I went, “You know, you’re totally right actually, there’s no perfect way to change a nappy.” Get over it. Just do it. Don’t worry about it. So that was really good. That made me feel a lot better actually and made those, the rest of those, you know, we had another two weeks of going to the unit every day to see him, while waiting for him to be ready to come home. So that made that much easier [laughs]. The barbecue.
Difficulties, challenges and limits

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.

Age at interview: 42
Sex: Female
Age at diagnosis: 38
SHOW TEXT VERSION
PRINT TRANSCRIPT
And [partner’s name] kids were young and at nursery and school and I just thought, 'I can't have your kids here I'm sorry, I just… I cannot risk making our daughter ill.'

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.

Age at interview: 32
Sex: Female
Age at diagnosis: 31
SHOW TEXT VERSION
PRINT TRANSCRIPT
And how has your husband been?

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. 
Sometimes partners felt like a bit of a ‘spare part’. As Kay said of her partner, “I was expressing milk so I felt like I had something to do, but he needed that [a way to be involved]”. Stewart recalls a few times when he said “the wrong thing” and felt “a wee bit lost” trying to help his wife. 

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.

Age at interview: 32
Sex: Female
Age at diagnosis: 28
SHOW TEXT VERSION
PRINT TRANSCRIPT
So I thought my husband could stay with me after giving birth. Oh my god the moment when they said he needed to leave, ah that was just the worst honestly. I've got a baby who's not feeding; I've not slept for 24 hours; I've just been through labour. My hand's twitching for some reason – I think where I ripped the drip out – it was like spasming. 

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. 
Partners, family and friends often wanted to be there to help women recover and to look after their babies. However, it was tricky balancing time off work. Partners were often saving paternity leave for when their baby was discharged from hospital which, for those babies in a neonatal unit, could be days, weeks or months away. So women who were allowed home from hospital often had to manage on their own. Other family members sometimes helped out. Nicola’s husband had barely any paternity leave left by the time she was discharged, so her mum “stepped in”.

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.

Age at interview: 35
Sex: Female
Age at diagnosis: 34
SHOW TEXT VERSION
PRINT TRANSCRIPT
And what about your partner how did he cope while you were in hospital, and …?

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.

Age at interview: 40
Sex: Female
Age at diagnosis: 35
SHOW TEXT VERSION
PRINT TRANSCRIPT
It was difficult and I would say… as I said we were lucky that my husband is self-employed. He can juggle work; he doesn’t have to be at a certain place at a certain time; he can sort of delay things somehow. He obviously still has to work. My in-laws live in-between us and the hospital, so they helped out with the driving. My daughter then used to go to nursery so that helped somehow. But it's just obviously me seeing her I can only… and she's not allowed on certain times of the day in SCBU (Special Care Baby Unit); she's only allowed an hour possibly; the visiting time is different for siblings. So, she can only come at a certain time of the day, and obviously that will have to impact on the time that my husband can take her.

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.
Sometimes women felt that their loved ones were not necessarily or always the people they wanted to talk to about what had happened. Paige explained: “[family members] went through it with you but they didn’t actually go through the actual things, so it's hard for them to understand where you're coming from”. In contrast, support groups of other women who have had pre-eclampsia are people “you feel like you can vent to”. Through mother groups and support groups (e.g. for premature babies), women sometimes made new friendships. You can read more about support from others with similar experiences in the sections on information and support.
 

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.

Age at interview: 42
Sex: Female
Age at diagnosis: 38
SHOW TEXT VERSION
PRINT TRANSCRIPT
If you're like me and keep things to yourself because you don’t want other people worrying it's a lot on your shoulders.

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.

Age at interview: 32
Sex: Female
Age at diagnosis: 31
SHOW TEXT VERSION
PRINT TRANSCRIPT
It’s funny because I think a lot of people don’t really know how to act. We didn’t get a lot of cards for a long time, and one thing that I see from all my other friends that have babies, is all the cards, you know, that arrive all of a sudden. A lot of people didn’t want to send cards. When we sent out the sort of text message sort of saying we had the baby, again a lot of people’s reaction was, ‘Do I say congratulations or don’t I?’ ‘Is this a good thing or not, sort of thing?’ And even when we would see people, you know, some of our closest friends were, sort of kept their distance a bit, because they weren’t sure how to act. And people weren’t sure what they could do to help. So I think we just sort of tried to carry on as normal, and yes, a lot of people were very unsure about how to be. We actually, about ten days after she was born, we actually had a sort of family engagement and quite a lot of people kept their distance. It was strange actually, because some people really kept their distance, whereas others were like, wow, what happened blah blah blah? And yes, it was very strange, that the people closest to us may be kept their distance and the people we didn’t know so well, wanted to know everything about what had happened.
donate
Previous Page
Next Page