Pre-eclampsia and high blood pressure in pregnancy

Babies born early and/or with health problems are usually looked after in a neonatal unit: a NICU (Neonatal Intensive Care Unit), LNU (Local Neonatal Unit) or SCBU (Special Care Baby Unit). Sometimes babies stay in these units for just a few days; other times, they stay for weeks or months. So women are sometimes discharged home whilst their baby stays in hospital. This separation can be really tough, practically and emotionally.

Early impressions of neonatal units

Seeing their baby in a neonatal unit was a shock for some of the people we interviewed. Some felt bad for not recognising their newborn baby. Samantha X’s baby had “lots of things going into her, she had a mask on her face, so I couldn’t really see what she looked like”. Sarah felt helpless: “you just want to protect them and you wish that they weren’t going through it”. Lyndsey didn’t take photos of her baby whilst he was in the incubator as she “didn’t really want to remember him that way”. 

For most of the people we spoke to, neonatal units were unfamiliar environments. Emma found it very noisy and upsetting seeing all the sick babies. Michael was also struck by the “constant sort of beeping and buzzing of different machines in the background”. Although Aileen was familiar with the environment as she is a neonatal nurse, her experience as a mother with a poorly baby gave her insights into what it is like to be a parent in a NICU.

Visiting a neonatal unit

Some women had known in advance that having a caesarean section would mean they couldn’t drive for several weeks. So for women who were discharged, this could make getting to and from the hospital very difficult. Sometimes their partner or other family members helped with lifts, but this wasn’t always possible. Women described the various solutions they came up with to manage this situation – from long bus rides, walking or taking occasional taxis until they could drive again.

Women often tried to spend lots of time with their baby. However, visiting hospital for long stretches of time could be exhausting and especially when they were themselves recovering from illness and birth. Samantha X’s baby was in SCBU for seven weeks and she developed a routine with her husband for their visits: “the longer it went on, the easier it was”.

Helen X’s baby stayed in hospital for two weeks after she was discharged. It was a stressful time but she tried not to let it show when she spent time with her son.

Helen X’s baby stayed in hospital for two weeks after she was discharged. It was a stressful time but she tried not to let it show when she spent time with her son.

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Age at interview: 31

Sex: Female

Age at diagnosis: 31

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So it was another couple of weeks…?

Two, two after me, yes.

And was that a worrying time or…?

Not really I don’t, I guess because he was well and every time we went in we could see that things were getting better. You know, he was off all his tubes quite quickly and then the monitoring that he was on, got less and less, you know, every time we went in. For me there wasn’t any reason to be worried, he was well, I knew it was just about getting him breastfed. So it wasn’t, I didn’t feel sort of worried for his health at that point. Really it was just the stress of going there and back I find. And, and yes, we tried really hard not to bring any of that in with us when we went to see him. We tried to always be really positive with him, and happy and, “Hello. How are you. Have you had a good day? Been nice for the nurses. Blah blah blah.” You know, keep it really light, so he didn’t feel any of our stress. 

Because we noticed that around us a bit, you could tell the parents that were more stressed about the whole thing. Their babies tended to cry more and you could really sense that the babies were picking up what vibe their parents brought in. So we sort of tried to keep all our crap away basically. And be really positive for him. But yes, I wasn’t, I wasn’t worried about his health. He was doing good yes.

Michael described what it was like seeing his baby son in hospital and preparing for when he could come home.

Michael described what it was like seeing his baby son in hospital and preparing for when he could come home.

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Age at interview: 32

Sex: Male

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Well he wasn’t in a state to be brought home, so we needed to stay in there for that long. It also felt like it was difficult because whenever we wanted, you know, wanted to pick him up and give him a cuddle, he was always connected to… with lots of wires or tubes, through feeding so you never felt like you could just sort of freely pick him up and sort of give him a cuddle or anything like that. So that wasn’t too pleasant. But at the same time, he was getting fantastic care and it felt like this was, almost like a nice rehearsal or warm up to bringing him home. So we were going in there every day, spending, you know, a good eight hours in hospital with him, doing his feeding, doing his nappy changes for those eight hours and then at the end of those eight hours, we would then sort of come home and eat, sleep, wake up the next morning, and then head back to the hospital, and so it was incredibly exhausting. Spending those eight hours in the hospital, but it gave us a chance to come home, and actually have a night’s before then heading back there so we were trying to think of whether that was good or bad or not, but so we managed to have plenty, you know, well not plenty, but you know a nice amount of sleep, as soon as my partner sort of came home with me. But the days at the hospital seemed to be really, really exhausting.

What was exhausting about them?

You never felt well, well not many of the seats were like comfortable, and you always felt like you were standing up, looking over him, sort of holding his hand or something similar, rather than just sort of sitting down in a nice sofa. And you also felt just like you were on the go a lot, so things that I find a lot easier now, obviously initially changing a nappy takes a long time. So the first time changing him as well. Trying to put his little arms through little sleeves in some clothes. That was just, takes a long time to do.

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.

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. 

Sometimes their baby had to be transferred to another hospital. Aileen’s baby was transferred and although she was supposed to be transferred at the same time, there was a delay with the transport arrangements: “I was just beside myself” and felt “betrayed”. This could mean an even longer journey to visit.

Women’s friends and wider family sometimes wanted to come into the hospital and meet the new baby. However, restrictions on neonatal units meant this wasn’t always possible, partly because of the risk of infection to the babies. Sometimes women didn’t want their family or friends to visit and a few women said they didn’t feel ready to talk to other people about the situation straightaway.

Holding and caring for their baby

Sometimes parents weren’t able to touch their babies at all for some time, because they were so premature or unwell. Tracey was only able to put a finger through to the incubator and “watch her open her eyes maybe once or twice a day, and she'd soon close them again”. Betty could only give her baby “just a pat; you couldn’t stroke”. Some women, such as Kay, were allowed to try ‘containment holding’ to “cup” their babies.

Finding ways to be involved could be difficult for parents, as it often felt like care of their baby had been handed over entirely to the nurses. Some women felt marginalised by needing to ask for permission and get help with touching or picking up their baby. Dominie remembered a time when “one of the nurses in special care said to me, “I've just settled your child so you won't be getting him out today,” [… and I was] very taken back”. Kay found there often weren’t enough nurses on the ward to help get her baby out of the incubator. But some women said the nurses did well to include them. Betty said “it was nice to be involved” and thought it helped free up some of the nurses time to focus on other tasks. But experiences varied from hospital to hospital. After her baby was transferred to a second hospital, Betty found the nurses “a lot more militant” about her taking on the care work.

Women and their partners sometimes felt nervous about doing things for their babies initially, so watching the nurses gave them a chance to observe and build confidence. Helen X explained how she had lots of support and “advice on nappy changing, breastfeeding, this and that, just by being at the hospital”. Having nurses there to take care of the physical issues also meant that women could focus more on bonding and getting to know their babies. Betty found it gave her a chance to recover too: “I got a lot of sleep, I was able to convalesce, I ate healthily and I had experts teaching me the ropes. So, on the plus side, I felt more prepared when he actually came home”.

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.

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Age at interview: 31

Sex: Female

Age at diagnosis: 31

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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.

Aileen was a neonatal nurse and she wanted to use this experience to help when her baby was in hospital. Her experience as a mum has also shaped the ways she thinks about her job now.

Aileen was a neonatal nurse and she wanted to use this experience to help when her baby was in hospital. Her experience as a mum has also shaped the ways she thinks about her job now.

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Age at interview: 40

Sex: Female

Age at diagnosis: 35

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There are a few things that’s done not very well. Maybe because they're familiar with me, there's a few nurses who did say to me… I would say they were very busy. They'd say to me, "Right, you're a mum, you're not a nurse, you stay where you are." So that I didn’t appreciate that because I think… I don’t know if they were expecting me to do the suctioning with this baby. Well, I wanted to suction my baby. I was asking because I could see that my baby was quite frothy and I was asking, "Oh do you mind suctioning my baby," but she was so busy with a different baby, and I'd say, "Can I do it?" and she just said, "You're a mum, stay where you are, I'll…" in that sort of tone.

Yeah, so there is that… I can see now from a parent's perspective of that there's a boundary. You can't just touch your baby whenever you want to; it's sort of you have to ask permission, and you can't just come and visit your baby whenever you want to. I mean we are… parents can come any time but there are still that… because the ward is on the second floor, the neo-natal unit is on the ground floor – it's a long walk if I have… if I ask for a porter for a wheelchair it takes a while for them to arrive and I'm thinking, you know I'd rather… I can do it now. So, there's the hindrances; there's… and then when you get there there's a boundary. They say, "Well I've just changed your baby's nappy so baby's just fallen, just you know asleep so let's not disturb the baby," and things like that. Which now in my present professional care that changed me a lot.

Dominie sometimes found the dynamics in SCBU difficult. But she kept observing and asking the nurses questions. She thought that this, along with her background as a midwife, meant she was allowed more a role in caring for her baby.

Dominie sometimes found the dynamics in SCBU difficult. But she kept observing and asking the nurses questions. She thought that this, along with her background as a midwife, meant she was allowed more a role in caring for her baby.

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Age at interview: 25

Sex: Female

Age at diagnosis: 24

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With… it took probably about a week and I think more so because I was like, 'Ooh what you doing now, what you doing now, what you doing now?' that…then they were like, "Well you could do this." Because it was like changing a nappy. I watched them change so many nappies that I could have done.

And by the end, you know I was giving him… because they thought he had MRSA which he later on turned out not to, he had to have this special wash every day, so I used to have to strip him off – get him out of the incubator but I'd have to get him undressed in the incubator. Put him in, get him properly washed with this like thick like soap and then dry him out, put all his tubes back on and things like that. So, that made me feel more like in control and yeah. And they would often when they accepted handover though, they would say, "Oh well she's a midwife so she knows what she's doing," so that was quite nice that they did let me kind of loose, but I don’t know that every mother gets to do that.

Changing nappies, breastfeeding and/or expressing milk, skin-to-skin, bathing and dressing their babies were all ways that women were sometimes involved in looking after their babies. This allowed them to have physical contact with their babies, spend time together and bond. One way Paige tried to “feel closer” to her baby was by swapping a soft toy from her bed to her baby’s cot and vice versa “so I could smell her and she could smell me”.

Josie encourages medical professionals to focus more on bonding and promoting physical contact between mothers and babies in SCBU.

Josie encourages medical professionals to focus more on bonding and promoting physical contact between mothers and babies in SCBU.

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Age at interview: 45

Sex: Female

Age at diagnosis: 39

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Although it goes against the grain I know, is a bit less worry and emphasis on the issue of breastfeeding, and a bit more on, you know the issues of holding the baby and so on. I think because, as it…as I've discovered, as [son’s name] got older, I think there are things that he's very much missed out on in terms of… well in terms of the bonding. He's got some… even though he's fine now; he's got some issues with sensory processing and as I understand it I think that could be… really could be something to do with those first few weeks of his life where, even though I spent every day with him on the neo-natal unit, he was… you know I didn’t spend the nights with him. I was very anxious about holding him because he was so small and attached to a lot of stuff. And… and in terms of breastfeeding it's a very difficult thing to do when you have a very tiny baby.

Kate talked about naming her son as something she could “do” for him.

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Kate talked about naming her son as something she could “do” for him.

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Age at interview: 35

Sex: Female

Age at diagnosis: 34

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My partner and I finally named him after four days, because he was called ‘male infant’ for four days and I thought ‘well, he can’t go through life with a name like that’. But I didn’t want to name him because, well, I didn’t really know him, you know, I wanted to look at his eyes and decide [laughs]. So we came up with his name and he became a real little person and it’s a big responsibility naming a child. So I thought ‘this was the first thing I’ve actually been able to do for you’.

Paige gave her baby ‘kangaroo care’ in SCBU to keep her baby warm as well as helping with bonding.

Paige gave her baby ‘kangaroo care’ in SCBU to keep her baby warm as well as helping with bonding.

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Age at interview: 20

Sex: Female

Age at diagnosis: 19

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Oh kangaroo care is the skin to skin. So, usually when they're in neo-natal and they're in intensive care they're just usually in a nappy. And then they encourage you to take… if you don’t feel comfortable but they encourage you to like put the baby down your top just…even for a full term baby skin to skin it's the very first thing they try to encourage, so they try to encourage it as much as they can, and they just seem to settle. They're meant to still be inside you so you're the only person they really know, then all of a sudden they're taken out their comfort zone; they're not with mum; they're put in this incubator – OK it warms them up but it's not really stimulating of their mum so when they're on you they just… they just seem to relax.

Mm mm. And did you feel that was very important for your bonding?

Yeah definitely. It's hard for it to bond through… I don’t know it's just… when you're on your clothes and you're cuddling her you just don’t seem to be close to her, but with kangaroo care then they're on you; you can feel them breathing; you can smell them and then they give you mirrors as well, which when they first handed me a mirror – like a little compact mirror – I was like, 'What's that all about?' But like you can't see their face; they're down here on you and then you hold the mirror and you get to actually to see them on you and that really helps because you can see to see how settled they are because when you're not holding them down they're quite fidgety; they're trying to get comfortable, whereas when you’ve got…they're on you they just seem to relax, just like fall asleep on you.

Emotional and practical support

Women often talked about the support they received from the nurses on neonatal units. Kay described them as “amazing”. You can read more about the support from health professionals, including nurses, here.

Some units provided space for the parents and families of poorly babies. These included family rooms, kitchenettes, and sometimes overnight accommodation for parents who were due to take their babies home in the next day or so. Julie’s hospital also arranged for talks from parents whose babies had previously been in a neonatal unit.

Kay said the nurses knew her baby well. They helped build up Kay’s knowledge and confidence for looking after her daughter.

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Kay said the nurses knew her baby well. They helped build up Kay’s knowledge and confidence for looking after her daughter.

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Age at interview: 42

Sex: Female

Age at diagnosis: 38

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And when she first… we first found out she had chronic lung disease and I said to one of the nurses, "Is my baby coming home with oxygen?" and she was like, "I can't answer that." I went, "Please," and she went, "Yeah, your baby's coming home on oxygen," and the honesty and the professionalism of them was outstanding. Their support, not just your baby, but to you as parents you know – making sure you're… you know everything. I mean, don’t get me wrong, the doctors were brilliant, I wouldn’t ask them anything. I asked the nurse because they know… they know those babies inside out. The charge nurses, the three of them; two of them are older and they’ve worked in that industry 30 odd years; they know more probably any doctor about my baby because they're with her every day. And they really did save her life. All her techniques, all the… all the pushing you know. Like the first time she went in her…come out the incubator and went in a hot cot. I was having kittens; couldn’t sleep that night. I was like… don’t know what I thought; she was going to freeze to death or something, that was never going to happen. I'd wrapped her up so well. The next day I went and said, "Look…" she was actually overheating [laughs], "You were cooking her." 

She was in intensive care and they were having a debate – the nurse and the doctor – about… there was a new baby coming in needing intensive care, so one had to move to the next level down, the high dependency, and we were listening, and it was like, "Oh you know Imogen’s the smallest baby in this ward still, but she's the most stable."

And we were like, 'Oh we're going to get out of intensive care,' which is so stupid because you're only moving into another room [laughs]; the same equipment's there, it's just a lower ratio nurse to patient. And we were over the moon; we were like, 'Yes.'

It was a step forward. You know they didn’t look on her as being weak; they looked at her as being, 'Yes she's small, but she's stable, she's doing well.' And they gave us the confidence to handle a child.

Babies discharged from hospital

Women and their partners looked forward to when their baby would be healthy enough to come home so, as Kate said, they could be “a proper little family”. But this could be a scary transition and some women worried in case something went wrong.

Some babies had ongoing health concerns and needs even after discharge and needed regular checks at the hospital or GP. But some had no lasting impacts from being born prematurely or being unwell when very little. Kate described her son as a “strapping lad now. You wouldn’t know that he was forced to be a month early”.

Samantha X talked about the health of her baby daughter when she was discharged from hospital.

Samantha X talked about the health of her baby daughter when she was discharged from hospital.

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Age at interview: 32

Sex: Female

Age at diagnosis: 31

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Basically she had to be feeding on the demand, she yes, so feeding on demand, I think it was over four pounds in weight, she was four pounds four when she came home. And obviously sort of pooing and weeing okay. And completely off any of the machines that she had to help her breath. We were lucky she was never ventilated. I do know some parents of premature babies who have brought their children home on oxygen. We didn’t have to worry about any of that. So it was really kind of growth and like I said being about to feed on demand, and pooing and weeing, and you know, breathing okay.