There are many reasons why a baby may need to spend some time in a special care unit (SCBU) or a neonatal intensive care unit (NICU). These units offer different levels of care, depending on what is most appropriate for the needs of the baby. Sometimes there is a problem with the baby when he or she is born. Sometimes, their mother develops a condition (e.g. pre-eclampsia - high blood pressure or placenta praevia- the placenta may be partly or completely covering the cervix/birth canal) that means that the baby is delivered early, and so needs extra care and monitoring for a few weeks.
Helen’s baby was delivered at almost 33 weeks when she developed HELLP syndrome (a combined liver and blood clotting disorder). He was 2.05 kg (4 lbs 8 oz) when he was born and stayed in hospital for 3 weeks until he was big enough to go home. Samantha’s baby was born at 29 weeks gestation when she developed pre-eclampsia. Her daughter was in special care for 7 weeks before she was able to come home. Alex had placenta praevia and was in hospital for several weeks before her baby was born at 34 weeks. Doctors had been keen for the baby to develop for as many weeks as possible before she was born.
Alex is a solicitor, married with two children. White British.
When she was born, they wrapped her up and they brought over to me quickly just to sort of touch her, and they said, “Can you…You can hear that she’s grunting a bit, which means that struggling to breathe a bit. So we need to take her down. So they took her down. [Husband] stayed with me for a bit while they sewed me up. And then I went back into the labour ward and he, the midwife then took him down to special care with [daughter].
And she was doing fine initially, and at 34 weeks they didn’t think that she would necessarily have that much trouble breathing. I’d had the steroid injections the first time I came in, and then I think at 32 weeks I’d had all the steroids to try and mature her lungs and on the, I’d been having growth scans every two weeks.
They thought she was quite a healthy weight so… I wasn’t, which again sounds a bit naïve that worried about how she was going to be. I thought… and I think because they’d also taken us down to show us special care very early on and when we went on there had been a baby that had been born. She was the exact same gestational age, but she’d already been born at 26 weeks and so her parents very kindly gave us permission to have a look at her. She happened to have the same name as our elder daughter, which sort of freaked us out a bit, but so we’d seen what a 26 weeker looked like. And then, they showed us a 32 and there was such a massive difference. And they kept re-iterating every, you know, every day makes a difference at this age. So, I sort of thought we were going to be fine really. We were fine ultimately, but she had a few more problems breathing than they had envisaged her. But it, it turned out to be the exact right time, because of the antibodies that I have had also started attacking her red blood cells. So she needed to come out then, regardless really of, of the placenta issue so…
For some babies, their prematurity can lead to problems. Kerry had placenta praevia and her baby was born at 28 weeks and in special care for 11 weeks.
Kerry is a receptionist. She has three children and lives with her partner. White British.
He was in there for another seven days. He went back into Nursery 3. And he was fine, he’s come home. Nothing until he was about six month old and then I’ve noticed, like a really noisy breathing when he breathes. It’s like the only way to describe it is a grown man snoring really loud. People do look at you in the street and they must think, why she’s got that baby out. It sounds as though he’s got a chest infection.
He was referred to [city] Children’s Hospital. He was diagnosed with subglottic cysts which is caused through ventilation. He was operated on in December for that. He was fine for a few weeks. He’s just recently over the last three weeks the noise has come back, so he’s due to see them again in three weeks over that.
He’s nearly eighteen month old. He doesn’t walk. He doesn’t make any noises. He doesn’t Mum or Dad or nothing like that. Playtime he doesn’t, he’s still like a little baby. If you give him a toy, like a normal eighteen month old, would like probably a book would probably try and turn the pages, he just chews on it like a baby. He’s really, he doesn’t like strangers. He’s really anxious.
He’s got, as for his development, he’s really behind. He’s not really sociable. If a stranger were to come in the room and he was there, he would scream. You can’t take him shopping, you can’t take him to the [shopping] Centre or anywhere like that. He doesn’t like crowds. They think he’s slightly autistic. And he’s now being tested for problems with his liver and spleen. Something wrong with his enzymes which affect the issues to the brain. They think, they’ve tested him really for all kinds at the moment because he looks quite different to, like the other two, like, with the half Turkish, he’s really pale skin, blue eyes, blonde hair. His brothers are all dark skinned, dark hair, dark eyes. His eyes are really big. They stand out a lot. He does look, you can see when you look at him that something’s not quite right. But they are running tests, but they’re unsure at the moment of what exactly it is that’s wrong.
Okay so that’s sort of waiting to find out?
They think all that would have been caused through premature birth.
Okay and that must be really worrying?
Yes. It is yes. Because he’s eighteen month old and he’s been through so much, and all because my placenta didn’t stick in the right place. That’s what I blame it on.
And how long did he end up being in hospital before he came home?
Sometimes, if clinicians are aware that the mother’s condition may lead to a premature birth, they are able to prepare the parents for their baby being in special care (SCBU). When she was admitted to hospital with pre-eclampsia, doctors came to talk to Samantha and her husband about what would happen if their daughter was born at 29 weeks gestation, so they felt prepared. Alex saw the special care baby unit before her baby was born which had helped to reassure her.
Michael is a website manager. He and his partner were expecting their first child. White Australian.
A few days before that, we had been to see some of the doctors in the hospital and one of the doctors who was a young doctor, she was about 30 years of age and she was talking, and she was talking about a possibility that we might have to have our baby earlier than normal. And we were like, okay that’s interesting. And she’d sort of explained to us that, she was born at 32 weeks herself and so part of me was sort of feeling, okay we’re almost up to 33 weeks now, and here’s you know, a well-educated, attractive doctor, whose obviously done really, really well for herself, she was born at 32 weeks and it hasn’t prevented her from doing anything at all. So that had actually sort of, that was in the back of my mind, thinking, okay there mustn’t be too much wrong with being born at 32/33 weeks. So there was that.
And I think we’d also had a discussion with a few other people, some friends who had had a baby earlier last year, also said that when we got past I think the 31 or 30 week mark, “Ooh that’s a major milestone.” I was like, “Really, why is that?” And they said, “Most of the organs are probably formed by that stage, so… “I obviously remembered that when we were in there being told we were about to have a baby in a couple of hours. So I was thinking that things should be okay at being born at 32/33 weeks.
Rob is now a house-husband, and lives with his wife and three daughters. White British.
So, and then she said, “Well you can come and see her. We’ve got to take her up to NICU.” And that, bloody Thor hit me over the head with a hammer then, she’s just said that and now I’ve got to go up there. What’s wrong with baba like you know? And she said we’ve got to take up to the… you can come and see her if you like, before they take her up.”
So they come out the theatre with her all wrapped up. I mean she was proper wrapped, about twenty blankets and just about see her little face and they kind of showed her to me, and then nurse just ran, like because the NICU is upstairs so she just ran right up the corridor like and I said, “Look, well what’s…” You know, and I was stood there like, “What shall I do, you know? What happens here now?” I mean, you know, and I can’t… again it’s all a bit blurry.
But they kind of said there’s nothing you can do here, so you might as well go with your babe, you know. So I went up. Followed the nurse up. Me Dad came… My wife’s Dad was with me. So we went upstairs and we went to go in, and they wouldn’t let us see [third daughter], because they had to set her up with the incubator and whatever, you know. And they said, “Well….” You know, I stopped someone and I said, you know, “Well what’s going on?” I said, “Honestly I don’t know, you know, they’re dealing with her down there. I don’t know.” And they put her in one of these incubator things. And eventually they let us see her after about ten minutes and she had a few tubes in and stuff and you know, because she wasn’t breathing properly. And I’ve since found out she had to be resuscitated a couple of times, because they’d given her so much bloody medication it knocked baby out. So from what I can understand she was stillborn, but they managed to bring her back, and then she went again and they brought her back and that’s why they took her upstairs quick, because she was on oxygen and she had a little tube in to do something or whatever.
You know, but the NICU staff they’re just amazing. Honest to goodness there’s the most amazing team of doctors and nurses I have, I mean honestly, you know, you, unsung heroes. People say oh you know, this, that and the other, but that’s what they were. I mean honest to goodness they was amazing. They couldn’t give me enough information. Even if I said, “What does that red button mean?” They would, they would tell me, I wouldn’t just get, in a minute. Even though they had all these other little babas to look after and some of them was just the size of your pen, some of them was tiny. You know, but they had time. If you asked a question, they answered, you know, whatever, you wouldn’t get brushed aside. They always had five minutes for you. And no question was, no question was too much trouble. However serious or however little it was, you know, they would answer it, and, and at no point did I ever worry about my baba once she was on that ward. Not once. And she was on there eight days. I think in the end she was up there for. But at no point did I ever worry about her, because they up there was amazing. I was allowed to go and see her. I think… when I wasn’t with her I was there. You know, I think, you know, if I went up there three, four o’clock in the morning a couple of times, just sat there holding her, not a problem, you know, it wasn’t too much trouble. It wasn’t nap time, it wasn’t this, do you know what I mean, it was whatever you want, you know.
It can be very depressing and frightening for parents to see their baby attached to wires and monitors and feeling there is very little they could do for them. Craig said he tried not to connect with his baby at first because he was scared that he would lose him. Being able to cuddle her baby, change his nappy and help with feeds had helped Helen cope.
People talked very highly of the staff in the special care units, Craig said they were “absolutely amazing”. Some described the atmosphere as calm but noisy. Michael, whose son was in special care for 3 weeks, said, “There’s lots of medical equipment there, monitoring the breathing, monitoring the heart rate of all the different babies, so there’s just this constant sort of beeping and buzzing of different machines in the background.”
Mothers described feeling very distressed that they were separated from their babies, although this was often to do with their own health status.
Farkhanda is a British Pakistani lawyer, married with 4 sons.
So I went in to see my baby and saw the baby for the first time. We had a nice one to one skin contact and it was the first time that my baby was picked up, but they said that they deliberately did that, they wanted me to be the first one, my family didn’t pick him up and he was absolutely gorgeous and I remember thinking, all this time it was about him, but really it was about, we didn’t know it was going to be about me, so I said, “When’s my baby’s operation.”
And they’re going, your baby’s exomphalos fixed itself. We tied it up into a tube ready for an operation and in a few hours it fell into its belly into the right position. We said, “Then may be for the heart defect. We were told that the baby was born with an open valve.” I said, “When’s my baby being taken to Great Ormond Street for the hospital.” They go, “It’s not needed, the valve’s opened itself.
So this baby that needed major operations was fine. And you know, as soon as she said that to me, they told me, “The longest you can be downstairs to see the baby was about fifteen minutes, and then you’re going to need your medicine, because the pain relief is…” Because I needed my medicine every ten minutes, my pump. But I couldn’t take the pump with me because I had an epidural. And I had the gas, I couldn’t carry to much with the wheelchair.
And I’m thinking, I don’t feel very well, can you take the baby, I need to go back upstairs.
And it was so nice, because they met me for the first time, yet they knew me really well. So I I mean I walked into the baby care unit. The SCBU and I remember them saying, “This is Baby [Name]’s Mum.” And they got up to handshake me. And they said, “Hi Farkhanda.” And I said, “How do you know my name?” And they said, “We all know you. We’ve all heard your story. You’re a fighter and we’ve all heard about you, and I remember going into the baby care unit, and all the specialist staff, the nurses, all coming up just to see who I was.
And I remember the lady said to me, “I looked after your baby when he was born.” And I said, “Could you come close to me.” And she said, “Yes.” And I gave her a kiss, and I said, “That’s thank you for being a Mum to my baby, because I said to my husband my baby’s born. He might not have a Mum and in my mind I thought you would be his Mum for his first few hours. And she started crying [laughs].
Age at interview:
Age at diagnosis:
Samantha is a pensions consultant. She is married with one daughter. White British.
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 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.
Every so often something will occur to me, and I will speak to another friend whose got a baby and I’ll sort of say to him, you know, “When you first went up there, what happened here? And when did they come and talk to you, and that sort of thing? Because I can’t remember a lot of things and again, you know, I’d always just had in my head that we would have a baby, you know, and she’d be given to us or he would be given to us and we’d kind of have to get on with it, and I just, I wasn’t prepared emotionally at all for, for what was going to happen.
Some mothers were able to establish a visiting routine while still in hospital. Helen began visiting her son several times a day. “So I would try and go up during the day every time pretty much [he was fed] and sometimes I’d go up in the night if I couldn’t sleep.” However for other mothers it was not easy. They needed to recover from the birth. Alex had high levels of medication to help her recover and she described the early days in hospital as a “bit of a blur”. Belinda was wheelchair-bound while in hospital, “I do remember the NICU staff being quite nasty about the fact that I never saw the baby, but the problem was I couldn’t actually wheel myself up to another part of the hospital to go and see the baby.”
It was important for some women to try and provide breast milk for their babies while they were in special care, although some found this quite stressful. Alex expressed some colostrum for her daughter, as she felt “that was the only thing I could do for her”. However Hana found this really difficult with twins.
Hana is a manager in banking and finance. She is married with twins, a boy and girl. White British.
So I remember of a night time, it was like an hour trying to feed my daughter with the bottle because I thought I just can’t do breastfeed with her because she wouldn’t take it. And then I was doing an hour on the breast pump, trying to create milk for my son to try and help him, and then literally the next time round, it was like 30 mins later, I was started to feed my daughter again and it was just continual. And I just had no energy whatsoever. I was just completely exhausted. And then my son, as I say, he was rejecting the milk. So I was trying my best to try and give him something. I felt so guilty because I wasn’t producing enough for him. It was just really stressful. It was not a nice time at all.
Having a wife or partner in one part of the hospital and a baby in another was described as stressful by some of the fathers (partners).
Often the mothers were discharged before their babies. Although they quickly slipped into a routine, the daily travel to and from the hospital, and spending hours at their baby’s cot-side was very tiring. Especially as many women were recovering from surgery or severe illness themselves. Many talked of the difficulties of transport, as they often could not drive after their surgery. Samantha got cabs for a few days and then buses, which took a long time. Kerry drove to the hospital. She is aware that this may have delayed her own recovery, but she could not afford the cost of a cab. “I was walking with my back arched…I couldn’t straighten myself up. But I just thought, you know, they are my kids, I have to do it.”
Helen is a physiotherapist. She has one son and lives with her partner. This was her first pregnancy. White Australian.
But yes, so then I got discharged and go to come home, which was fantastic. I’ve never been so happy to see this couch in my life. And then, so that was sort of the next phase of two weeks of going in to see him. He was well the whole time, which was really, really good. He was on, he sort of had a bit of oxygen and a heated mattress. I think it was about five days after he was born, and then after that, it was essentially nothing, other than he needed to develop a sucking reflex and to be able to eat for himself. So that, that was really good that he was healthy. And so yes, so we just had the exhaustion of going to and from the hospital every day, sitting in that horrible institution kind of room all the time, and that was exhausting. And, and we also fiddled with that as to like what was the best way to work this again, you know. Because you feel like you want to be there all the time, because you’re the child’s parent, and you really want to be there and all the rest of it. But then you think, what am I doing here, you know, like he’s asleep half the time. There’s no point me standing here, watching him sleep when I need to rest. You know, I’ve physically been through a fair bit and this child’s going to come home to me, and if I’m useless when he comes home what’s the point. So yes, so we sort of I think eventually decided to kind of go in for a reasonable chunk of the day, but then come at a reasonable hour and not feel like we had to go back and stuff like that. And again, I think there were some nurses that were better about then than others. Some made you feel like, oh you’re not coming back for a night time feed, you know, and all that. Well no I’m not [laughs] I’m going to sleep while I can, thanks very much.
Helen, whose baby was in special care for three weeks, decided she needed to be well enough to care for her baby when he did come home, so she spent some of the day at the hospital with her son but not all of it. Making use of the facilities in the parent’s room had helped to make her time there less tiring. The night before their baby came home Samantha and her husband stayed in a flat next to the special care unit which was especially for parents.
Alex felt guilty for the time that she was not in hospital with her new daughter, but staff encouraged her to also spend time at home with her toddler. Hana was discharged with her daughter, but her son remained in special care. She felt guilty that she was only able to get to see her son once a day.
Alex is a solicitor, married with two children. White British.
Yes, it was fine. I mean I felt really, really guilty the days I wasn’t in hospital. There was again that pull of who do I prioritise and in the end one of the special care nurses said to me, “You know, it sounds really harsh, but [second daughter] doesn’t know if you’re here or not, and [first daughter] does. And, you know, she’s been through a lot.” And she said, “You’re already here more than most people, you know. You’re here you know, 24/7 when you can be, and you know, you’ve got to try and do what works for your whole family. And you know, it wasn’t as if I was doing nothing. I was still expressing every two hours at home, and doing as much as I could for her then. Yes. Hopefully it didn’t have to go on for too long. I mean I feel for those parents who have children you know, in there for months and months. It’s a, but in a bizarre way, you sort of get into own little routine of how things are, and what time, you know, they’re absolutely fantastic in special care in terms of their timing of their cares, they work those around what works for you and when you’re going to be in and… you know, they couldn’t have made it easier really.
Overall, having a baby in special care was very traumatic for parents. Alex said, “that rollercoaster, you know, it's so traumatic for you at the time, and there’s always someone else that is worse off, and you know, these little babies coming in at one and two pounds and you think, gosh, what we’ve gone through is nothing…”