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Pre-eclampsia and high blood pressure in pregnancy

Mothers and babies spending time together in hospital

Bonding and spending time with their baby was important, but this could be challenging for women we interviewed who had had pre-eclampsia or HELLP syndrome.

Women and their babies were often separated in the hospital after birth, and were unable to see each other right away. This could be because the mother was very unwell and needed stabilising, or in some cases, was being cared for in an ICU (Intensive Care Unit) or HDU (High Dependency Unit). Some mothers who had caesarean sections said they had been able to briefly see their baby in the operating theatre, but then there could be hours or even days before the next opportunity to see or touch their baby. Paige wasn’t able to see her baby for 26 hours as she was “bed-bound”. Michael remembered it being a “bit difficult” having his wife in one part of the hospital and their new baby in another, and “neither of them were in a state to be transported to the other for a while”.

Having pre-eclampsia meant that often the baby needed to be delivered early. Women we spoke to had their baby as early as 25 weeks (whereas a full-term baby would be born at 37-40 weeks). So sometimes the baby needed to be cared for in a neonatal unit for several weeks or even months. There are three main levels of neonatal units to suit the needs of different babies: NICU (Neonatal Intensive Care Unit), LNU (Local Neonatal Unit) and SCBU (Special Care Baby Unit). This meant that, as well as recovering their own health, some women also had the challenge of visiting their new baby in the neonatal unit. This could be in a different part of the hospital or, in some cases, in a different hospital. There could be extra restrictions on visits and physical contact for babies born early and with health problems and in neonatal units.
 

There was a delay before Dominie was able to see her baby. It was a very exhausting time both physically and emotionally.

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Age at interview: 25
Sex: Female
Age at diagnosis: 24
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So I think that I delivered him at about twenty past eight in the evening and I couldn’t get to see him till about two in the morning I think it was. So, normally we would want mums to like express and everything like that, but for me I just, like I said, I was just so tired and out of it, I kind of… I slept for a few hours; I then had a shower, got myself a bit sorted, and actually my husband and my mum went down to see my son at about ten o'clock, so a couple of hours afterwards. And then I went to see him at about two. It was just very weird because you’ve got this child that’s in a plastic box and you know them but you don’t know them - it's a very strange feeling – and I didn’t get to hold him until the Monday morning, and I didn’t even ask really; they just went, "Do you want to hold him today?" and I was a bit shocked and so it was, yeah Monday like 11 o'clock, and I remember being really hungry because I hadn’t had breakfast, and I'd missed lunch because I just… I just want to hold him for hours, and I cried… I just cried because that for me then was when I met him, and you know that was the realisation then that I'd had a baby. And unfortunately my husband had had to go back to work, he couldn’t… because we were going to save his two weeks paternity for when I had come home with my son. So, that was really hard because I sat there and I cried and it was an emotional time, but I was on my own and so I couldn’t really share it with anyone, whereas I imagine that if you have your baby and you get given your baby you get to have that connection as like a family but we didn’t get that for, you know, until later on that night when my husband then got to have a hold. But yeah that was… it was really hard yeah.
 

Kay was very unwell but it was important to her to spend time with her daughter, as she didn’t know the chances of her baby surviving.

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Age at interview: 42
Sex: Female
Age at diagnosis: 38
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I went up to see her in the wheelchair and I was ill, I was really ill. I shouldn’t have been there. I just kept thinking, 'I've got to see her in case she dies. I just want to see my baby.' So I'd seen her and they said, "You can't hold her but you can cup her." So, I pushed the wheelchair in and I just sat with my hands on her head and her little bum, and I was there for about half an hour, and I was so ill. They took me back down and I just remember thinking, 'I have to get out of intensive care,' because once you're on the ward you can come and go as you please, but intensive care they obviously don’t like you just get up and go up the stairs. And so I went to see the nurse and she said, "We'll see how you are tomorrow." So, I rested all day and my mum came in and my other daughter came in and I tried to warn them what they were going upstairs to see because they're so small you just… nothing can prepare you for that. You can see as many pictures and you can read as many books as you like, but nothing prepares you for a baby that size. 

So, I… the nurse said, "Come on," the next morning, "we'll get you showered." So, I went and showered and I fainted. It's just so hot… the showers are so small; it's an old hospital and I fainted, and I said to her, "Look it's the heat." My kidneys still obviously weren't working and I was still overheating all the time. But she spoke up for me with the doctor and said, "Look, you know she really wants to go upstairs." So they put me upstairs, and the nurses, they'd kept my room for me. So I was still outside the nurse's station, and it was good because when you're up there you can come and go as you please, and they helped me express milk for her and obviously my body wasn’t ready for that, I was only 27 weeks pregnant; I was ill; it was a shock. 
Whilst being unwell and recovering from the birth, having a newborn to look after (in the hospital room or at home after being discharged) could also be physically tough. Olivia remembered that she barely slept for the first two days as her baby “didn’t sleep at all – he's a flipping reflux baby, so he didn’t want to lie down”.

Most women found that, once they and their babies were both home, bonding became much easier. Although a few said their experiences left them quite anxious about the health of their babies and that of themselves (see also the sections on emotional impacts, baby’s future health and women’s long-term health).
 

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

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

Being separated from their baby whilst in hospital presented challenges. Distance was one. Lyndsey said it was “not ideal” that the postnatal maternity ward and SCBU were on different floors of her hospital. Aileen remembered the NICU being a long walk from where she was and “if I ask for a porter for a wheelchair, it takes a while for them to arrive”. In addition to distance, some staff on the postnatal ward were unaware of their circumstances. Josie said there was “little understanding of the fact that I didn’t even have my baby with me” nor how ill she was.

Occasionally, women or their baby had to be transferred to another hospital. Kate was sent to an ICU in another hospital for a couple of days shortly after giving birth. Aileen’s baby was moved to another hospital as the NICU ward was too busy. This NICU was 30-40 miles away and visiting was tricky as she already had a young child at home and couldn’t drive because of the caesarean section. Betty was worried when she was told her baby would be transferred to another hospital: “unfortunately it doesn’t have the best reputation – wrongly because we have received fantastic care there”.
 

Samantha X’s baby was born prematurely as a result of pre-eclampsia. Visiting her baby in the neonatal unit was difficult as they were both so unwell.

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Age at interview: 32
Sex: Female
Age at diagnosis: 31
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She was born at quarter past eleven and I wasn’t able to go and see her until half past four. They wouldn’t let me off the ward because my blood pressure was still bad. when they eventually did let me off the ward, I had to go with a nurse, and my husband obviously, and I was only there for ten minutes. So that was a very, it was really difficult actually because I was still on quite a lot of medication. I was, my hormones were all over the place and I was very emotional. And then obviously, they sort of wheel you into special care which is, you know, quite a scary place the first time you go in there, when you don’t know what all the beeps are and what all the machines do and that sort of thing. And, you know, they sort of said, you know, “This is your daughter.” And it was really difficult to see her actually, because, because, you know, she had lots of things going into her, she had a mask on her face, so I couldn’t really see what she looked like. She her skin was very translucent so you could see, you know, the veins and that sort of thing, and obviously with the lungs being a problem area, it was obvious that it was really difficult for her breathing. And I think that, yes, that quite upset me at the time, and the fact that I could only stay for ten minutes as well, upset me quite a lot as well. And one of the other things that I sort of feel a bit cheated by is, because I was on a lot of medication I have very hazy recollection of that day. And I have to ask my husband. 
 

Kate had to be taken to a different hospital after giving birth because she was so unwell. It was hard to bond with her baby and she struggled with the physical impact on her body.

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Age at interview: 35
Sex: Female
Age at diagnosis: 34
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He was in neonatal.

In the same hospital?

No a different hospital a few miles away. But the nurses there were ever so good. They, they wrote a little diary from my son to me and of course that, that got me, that got me. So he wrote about what he’d been doing that day and but it was not real to me. And my partner showed me photographs and I actually said, “Have you got the right baby?” I didn’t recognise him. So... I didn’t have this maternal side to me, because I wasn’t allowed to have that. So I worried, I worried about when I’d see him again. Would he know me? Would he like me? Because I felt like I’d let him down. So yes, after four days, I finally went back to the hospital where my son was, and we were reunited and [upset] and I couldn’t really stand up without assistance, which is so frustrating because normally I’m really active and healthy and having to ring every time you want to get up. But I forced myself to do it. I probably shouldn’t have done, but, and then to have the catheter removed, they want you then to pass water and I remember ringing for the nurse and she gave me a jug. Oh God. And I was so embarrassed about it. But it was another step towards recovery. And after five days I finally had a bath. I mean I was disgusting. Absolutely disgusting. And there was a full length mirror in the bathroom and the nurse who helped me there she left me to it, and she said, “Now don’t look in the mirror.” But I did. And I didn’t recognise myself. Just elephantine bruises, the bruising, I don’t know where they’d come from. I don’t know if it was the caesarean or what, but it, I had bruises all down my thighs, all around my torso. And it was shocking. I couldn’t really bend very well, and didn’t really understand what, what had happened
Being separated from their new baby could be upsetting, making women feel they weren’t really able to be a mother. Kelly thought it was good that she had a private room rather than being on the main ward, but she also felt “a bit lost” there without her baby. Betty found it hard being on a different ward when her baby was in SCBU: “it felt like I’m not really a mother – you don’t have that bonding experience and, even when I did visit him, he was in a box and his skin was so raw and tender that you can't really touch him properly”. 

Having the option of a separate space for mother and baby was sometimes important. Emma said knowing her baby was being looked after in SCBU gave her the opportunity to rest and recover. Ruth X thought it was good that she was allowed to stay on the postnatal ward for some extra days because it was not fully booked out; this meant she could rest and heal quickly but also be near her baby.

Access to photographs or video of their baby could bridge the distance to some extent, and partners often helped with this. Although partners and other family members often tried to bridge mother and baby, it could be hard on them to be pulled in two different directions. Samantha X and her baby were in different parts of the hospital and she remembered her husband “going between the two of us”. Stewart described himself as being a “split dad or husband” and there was a “torn feeling” about which person he should be with.
 

Stewart’s wife, Claire, wasn’t able to go see their baby for a little while after giving birth. He thought it was good that the hospital set up a camera next to the cot for his wife.

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Age at interview: 38
Sex: Male
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I was allowed up after they'd done the checks and observations.

OK 

I was allowed to go up and see her. Obviously Claire wasn’t allowed to go up straight away; I think it was possibly the next day. What they did do which was a brilliant thing, and I hope they do a lot more of it, is they'd set up a camera up beside where our child was, and they had a monitor down beside Claire, so she could actually see the child.

Oh wow

And what was happening and it did…I'm sure it had an audio bit so we could… if I was upstairs in SCBU (Special Care Baby Unit) with the child that Claire could hear and we could speak to each other. I thought that was an amazing thing to do sort of thing yeah.
 

Lyndsey found it hard being separated from her baby. She remembered a time when she was told she couldn’t go see her baby and it took a long time to find out why.

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Age at interview: 39
Sex: Female
Age at diagnosis: 34
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The first days? Well it's all a bit of a blur really [laughs] because that first twenty four hours I was in and out of consciousness basically and [son’s name] was in Special Care and then I got moved from the labour ward up to postnatal ward; on a ward with everyone with their babies, their new babies, so that was quite hard. They didn’t have a spare side room until a few days later and then I think… yeah so I got moved on the Tuesday night. When did we move? We moved on Wednesday so my husband came to see me in the morning and then had to leave me on my own for most of the day because he was moving the house. Obviously [son’s name] was early so we didn’t anticipate me being in hospital. So yeah on that… I had one day, I think it was two days after birth when you're meant to feel quite low anyway and they'd had a… I think they'd had some kind of emergency with another baby in neo-natal so they couldn’t let me go down to see him so I was sort of left on my own and no-one really telling me anything. I think I had a cry and the nice nurse who happened to come on shift who I'd had previously before I'd had… who'd told me I was going down to labour ward, she came to sort of help me and explain what had happened because they couldn’t tell me before. I thought they were just being mean and not letting me go down so. But yeah so those first few days were quite hard.
 

Samantha X encouraged her husband to spend most of his time with their baby, but this meant she was on her own a lot.

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Age at interview: 32
Sex: Female
Age at diagnosis: 31
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Well the second day, again, because my blood pressure was still quite bad, I still was only allowed to go up there once for half an hour, and I felt, I felt, I think I felt quite lonely because my husband was trying to divide his time between myself and our daughter and he was exhausted and you know, I was worried about him. And so I wanted him, I didn’t want our daughter to be left on her own. I kind of felt like I was abandoning her and so I would say, “Well you know, I’d rather you went and spent time with her.” And so I felt quite lonely. Because although I was still getting one to one care so I still had a midwife with me, it just wasn’t the same. Every time I went to see her, it got easier to see her. But being away from her was really, was really, yes, it was really difficult. But then equally I was, I was, you know, I was still in a lot of pain. I was still on a lot of medication. And you know, I just wanted to sort of start getting up and out, and you know, they wouldn’t let me out of bed and all these sorts of things, and there was, it was frustrating as much as anything I think. That I was sort of stuck in bed, and I couldn’t go and see her, and even when I did go and see her I couldn’t do anything for her. 
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