Parents’ experiences of neonatal surgery

Daily Life – Getting into a routine at the hospital

Having a baby in hospital can be a stressful and exhausting time. Travelling can add to the stress, which is why many hospitals offer some form of accommodation on or near the site for family members. Amy said it “means the world” being able to stay right nearby. Developing a daily routine helped parents cope with the uncertainties of what was ahead for their baby. Many found they isolated themselves from the outside world and just drew close family around them to help them through the worrying hours and days at their baby’s side. Jason said that “you put your life on hold”, and his wife added that she couldn’t think of having any celebration for her birthday while the baby was in hospital. Everyone found a slightly different routine for themselves, depending on how well their baby was doing, what sort of unit they were in and what the visiting rules were.

Amy was at her daughter’s bedside from morning until night. Her mum stayed with her, but she isolated herself from friends. She kept herself going with a diary.

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Age at interview: 39

Age at diagnosis: 33

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So after she was born she was whisked off there, we had our first visit and that was, that was really emotional for me. And, actually, one of the things that I think people maybe, I don’t know if, I was released on the Sunday and then I got to stay in the hospital hotel, means the world. I mean honestly, it was it, it’s so vital. I mean we got to be right there. I was, you know, at the bedside from morning to night. I was able to be there and it was so important. I was so grateful that they have that facility. My mum stayed with me for the first few weeks there and I really appreciated that they had that. I had, we sent out an e-mail to friends to say we’d rather not have visitors for now. I found it, I found it too difficult. I couldn’t be the hostess. I just needed to be, I could only be one thing and I could only be that for her. I’d get up and I’d go there in the morning. The hospital staff there, over time, told me they were calling me glamour mummy because I’d come with [laughs] I’d, you know, get ready in the morning and I said, I just, I said it’s just me. I guess it’s one thing about being me, you know, there just needed to be some normality because nothing about this situation was normal.

So had the first surgery, the first day and then had, we think there must have been about twelve different procedures as time went on. So I stayed at the hospital. I sat at the, I was there every day. I spent the whole time, probably didn’t a lot of self-care so there probably wasn’t a lot, probably something I would say to parents, who are going through it, is probably to look after yourself and I think probably everybody on the other side says that. But when you’re in that moment, it’s so difficult. I spent a lot of time at that bedside. I would, I make notes. I kept a diary.

Sonya and Adam were in hospital for three days when their daughter needed a hernia operation at three weeks old. They didn’t really leave their daughter’s cot side at any stage, but were aware that families around them had got into more of a routine if they had been in hospital for a long time, or had other children they needed to look after at home.

Sonya and Adam described their intense experience in hospital with their daughter when she had a groin hernia operation. It was only three days so they didn’t get time to get into a routine.

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Sonya: Yeah, I mean the lady next to us she had a toddler and they lived about 50 minutes away and so she wasn’t there the whole time she had to go and, so she would come and go. Nobody else was there the whole time as they were kind of longer term.

Adam: That’s what I was gonna say I think it’s different, ours felt sort of quite short and intense and obviously not obviously their condition was much more, their children.

Sonya: More serious.

Adam: Yeah a more serious condition and so I don’t mean to belittle that but they, they were in there for such a long time I think it had become a daily routine to them so they were going for lunch and then coming back and they were going to sleep for seven or eight hours upstairs and things like that. And it was very different for us cos we were there for three days we just stood by a cot for three days and stared at her [laughs]. So I think you can’t really compare what they were doing to what we were doing and the woman next to us had been in there three weeks already I think hadn’t she.

Sonya: Yeah in the end.

Adam: So

Did you chat much to them or, or was everybody sort of very much in their own private space?

Sonya: A little bit not hugely. I mean she was very nice when we first arrived and when you left and I just sat holding Livvy with just tears running down my face she was very nice and chatted and asked and we obviously we talked about her daughter and what was going on. But then it was quite, I don’t know quite separate and.

Adam: I have to say you actually got a decent amount of privacy in that respect although it was quite sparse there was a lot of room between us you could draw the curtain and it felt like you were in a quite separate space which again if people are there a long term is a good thing cos it didn’t feel like we were on top of each other at all did it. And I think they spoke more between the people that had been there longer which again you’d expect because they’d been talking to each other for three weeks so we were in and out a lot quicker so. Yeah so we did speak but not really to any great length.

Daily Routine

Others found they fell into a routine fairly quickly, particularly if their baby was going to be in hospital for a long time. Joanne’s daughter had emergency surgery and a short bowel. She described how quickly “you start to get used to the hospital environment”. There was a lot of waiting; she was constantly hanging around waiting for one specialist or another to come and see her daughter.

Michelle and Harry and Mary found the routine they fell into visiting their sons was rather like a work routine all over again. They were arriving first thing in the morning, leaving last thing at night. Michelle said that the routine helped her cope, taking each day as it came. Mary found it helped to take regular tea breaks; she was touched that her parents waited all day in the café to keep her company during her breaks. If they had had to go back to work, dad’s also got into a routine of visiting at the end of their working day, rushing in before visiting hours finished. Although it was a juggle, Mary said her husband, “Used to love coming in after work in the evening, you know, spending his time with [son] which was also hard because you had to time it because there was a nurse handover at 8.00 p.m.”

Michelle and Harry said they got used to the daily routine of visiting their son and seeing the doctors very quickly. It felt almost like going to work.

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Michelle: But then, you know, you were spending 12 hours a day at the hospital and actually you get so used to somewhere it was almost like going into work, sort of, saying hello to people on reception and saying hello to all the team you know, it was kind of this is what you do.

Harry: We did develop quite strong relationships with the medical team and other parents as well.

Michelle: And other parents and you just get into a routine that’s your, that’s your kind of coping you take each day as it comes and you, you’re in your routine for that day. And to then have been out for four or five days and the went back with him for a check-up and it was really startling to me how long it felt that I’d been out, it was really strange to go back, it just felt like such a distant memory.

Harry: [Mmm]

Michelle: Which was very, very odd. I think probably because he was with me so I was kind of, you know, I was coming in with him rather than coming in alone and putting my coat in the cloakroom and scrubbing up and stepping in. So so yeah for now he’s still has his paediatric reviews he’s still very small but he is putting on weight really well.

Did you find that quite hard finding the balance, well you said you stayed in the first week then actually finding the balance between coming home-

Michelle: The first night I had to go home I found really difficult because I just didn’t want to leave him he was still in intensive care, he was still, you just, you want to be there every moment every day because you want to know exactly what’s happening and I hated coming in and stuff had happened I used to feel really disconcerted for the first kind of well what’s gone there and his dressing looked different and, and you’ve done this and he’s wearing this and he’s well he wasn’t wearing anything then was he cos he didn’t have any clothes on but it, you know, it’s, he looked different something, there was a new tube or there was a new dressing on or there was a new something and you hadn’t been there to see it, I hated that I really hated that.

Harry: And you can’t, it’s difficult to try and schedule, you just have to be there the whole time because he.

Michelle: They work on hospital time which was loose at best.

Harry: The teams come round at any time, and usually it all happens when you’ve popped out to get a milk.

Michelle: Yeah you pop to get a coffee and you’re whole world falls apart in that space of ten minutes so you do end up.

Harry: Lingering.

Michelle: Just being there you’ve gotta just be there the whole time cos you don’t know what you’re going to miss. And they obviously need to get on and do stuff when they need to get on and do stuff.

Mary and her husband quickly fell into a routine. She really appreciated the support she received from her parents who travelled from Ireland to keep her company while she visited her son in hospital.

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Age at interview: 42

Age at diagnosis: 41

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I fell into a routine of, you know, going down kind of in the morning and leaving, I’d normally time it around the around the change of shifts of the nurses so I tend to leave just before the change of shifts in the evening around 8 ‘o’ clock because they need, they just need, you know, you’d have to be asked to leave anyway because they need to put the babies back into their beds. And yes kind of get there in the morning for the ward rounds. Often I wouldn’t get there for 8.oo in the morning because the ward rounds would be happening and then you’ll have to sit outside anyway so I’d kind of get there for 9.00 or 10.00 in the morning and stay till 8.00 and just, you know, really kind of stayed by his by his bed and, you know, if he was sleeping I’d read and do the nappy changes do the feeds. I mean it’s also by kind of being there day in day out you kind of notice things so then the ward round happens I would know how many times he’d, you know, kind of whether there was more or less nappies in that day, I’d kind of also know what, what was going on. My parents were brilliant one thing they did was, they would just they were around they would come to the hospital and they would you know, for a few hours in the day they just come and wait in the café downstairs because it wasn’t, you couldn’t all obviously all be around the bed. But it was just so lovely that they just a very generous thing to do they would just kind of hang out in the café downstairs in the hospital for hours each day so when I had my tea breaks I'd have company and then go back up again and they were always there, that was a really lovely thing for them to do.

Yes, and did they live in London or?

No Dublin, they came and stayed, yes.

That must have been quite a big upheaval for them.

Yes, yes, yes, yes they stayed with my sister but it was just such a lovely thing to do so that somebody’s there because it can be a bit lonely when you come out for your tea break, but you need to also go for the tea breaks and yes that was.

Ally's son had gastroschisis*. The neonatal intensive care unit (NICU)* he was in allowed visiting 24 hours a day, but she and her husband soon tried to get into a routine they could sustain for weeks rather than a few intense days.

Ally tried to get into a routine that made sure she got some rest so that she could look after her son as best she could and find a bit of normality.

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Age at interview: 37

Age at diagnosis: 37

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And then basically we fell into the routine after that of day one just spending afternoons over there and again we were quite pragmatic and realistic that by sitting by his bedside, I don’t know if this might sound, I don’t know we didn’t stay like all afternoon all the time because I just don’t think that was doing anybody any good so we’d have little visits and then go and have a look around the local area, never far because once we went, when he was about three weeks and we went to a shop in [city] and I said ‘No this is far too far how would I get back, how would I get back’. but yeah go and have a bit of lunch or there was a park quite close by there was quite a lot going on in the area of [city] Hospital so I was quite happy to just go and get some downtime really or that luxury of having Ronald McDonald house you could go back and just have a sleep or just put the telly on and just try and I suppose relax really and make sure you’re alright for looking after [son].

And so the sort of routine was, did you go in the morning or did you just tend to go in the afternoon?

I’d go in the morning before ward rounds so that varied depending on how he’d been the night before, if it had been a bad night if there had been something not quite right I’d get up about 6:00 and I’d go across and just sit with him and obviously leave for ward rounds and then we’d go back after that then go and have a bit of lunch and then go back mid-afternoon and then tea time. So I’d say across the day we’re there about four or five times but maybe a couple of hours stints at a time but

But [husband] was with you pretty much the whole time?

Yeah.

Yeah.

Yeah, yeah yeah I think there was only two nights that he, maybe three that he came home and stayed over here.

Okay.

But yeah we were pretty much over at Ronald McDonald together. We just, I don’t know you just like I don’t know if like because we just put it into little sections or right we’re here move onto the next bit and then onto the next and were moving to going home and I don’t know you just, you just manage. And maybe about, maybe a big part of it is maybe as someone said to the other parents try and keep that normality of doing things for you, go and have a bit of lunch together or go and have a walk in the park, go and have just a bit of time out because you need it otherwise it does get tough. And it’s quite hard as well, something I did find hard was because it’s a children’s hospital you’re obviously dealing with your own whatever illness your own child has got but as you walk through the hospital you see other poorly children and that’s heart-breaking like children with cancer and you’re in a delicate sort of place yourself and it’s just so emotive I suppose.

Yeah.

Or seeing other parents with their children. We didn’t really talk much to other parents on the unit and I think that was just - I don’t know if it was part of our preference of not wanting to intrude or be nosey or, I’m not sure if other parents maybe talked to each other more and said ‘What’s your child in for’ I just never wanted to do that as I don’t think it’s fair to put somebody in that position. But you see parents at Ronald McDonald and have little chats about what their experiences were. I mean some of them are there months and you think gosh at least we, I always think we knew what was coming for us, some parents their baby’s born and they have no idea and that must be really tough. We could, we could plan, we could we’d get our awareness and we were prepared really as best we could, sorry as best we could be.

Hayley and Thomas’s son had exomphalos* and was in hospital for several months, before he died. They were encouraged to try and give him as normal experience as possible so played him music and read stories ever night.

Hayley and Thomas tried to make the best of their son’s situation for the last 6 weeks of his life, and make it as homely as possible. He had a bath and story every night.

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Thomas: And the last six weeks of his life were really hard because he was intubated-

Hayley: Tough.

Thomas: He was sedated all the time and that, that was really, really hard. But for the five months before that he was, he was like a normal baby only within the hospital confines and the hospital bedside in that sort of respect.

Hayley: But we tried.

Thomas: We tried to make the best of it.

Hayley: We tried to make the best of it and we tried to pretend that we, I know it sounds ridiculous, but this is where we lived and this is our, this is his home and, you know, I, we had play mats and I gave him a bath every night and.

Thomas: We would read him books.

Hayley: We would read him books.

What all on the unit

Hayley: All on the-

And they were supportive of that?

Hayley: They were - you kind of didn’t do anything until somebody said it, because you, you weren’t really sure about the rules but, you know, it was like a, I’d always played [son] music when I was pregnant and then I was sort of trying to secretly do it without any and the nurse said to me ‘You can play music’ and then from then on we didn’t stop playing him music.

Thomas: Yeah.

Hayley: And even some of the parents would be like ‘Oh there’s [son]’s Disney songs’ and stuff, you know, we decided to do that or the doctor would say ‘Okay, have you got a play mat at home?’ and I’m like yes I’ll bring that in and just made sure that we just did everything you know. And that’s why when they said do you want to take him for a walk although it was scary we had to take oxygen and monitors and everything I was just like yes I can do this, we can do this because I wanted him to have the best that he could have.

Thomas: Give him an incentive to get out as well [laugh].

Hayley: No not like that but, you know, this, you know, you wanna be normal don’t you.

Some found themselves reacting differently to their normal selves. Louise said, “My sisters commented that they were surprised, because I'm a worrier as well, like my mother, but they were surprised how strong I was but I think I was, no this is, he’s going to be fine and I’m on a mission to get through this. And I was shut down I think through a lot of it whereas my husband who’s not a worrier at all was at breaking point.”

Many parents valued staying near their baby in hospital accommodation, often provided by a charity. This made the daily routine much easier to manage. But it could mean that mothers spent long stretches on their own at their baby’s side, if their partner had gone back to work, as many had to. Shanise found herself feeling very isolated and bored in the months she sat by her son’s cot in hospital, “I was bored, as well, like so bored.” Mary said the days felt very long and her husband used to bring something to read. Michelle and Joanne both remember a lot of waiting around to speak to a doctor and not feeling able to take a break in case they missed something.

Zoe’s daughter with gastroschisis was in a hospital 3 hours drive from home. She could stay over but it was lonely during the weeks when her partner was back at work.

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Age at interview: 24

Age at diagnosis: 22

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Normally in NICU we used to get up first thing in the morning quite, quite early round about half seven, eightish, we would both get showered and we’d head over to the hospital and we’d stay there until the nurses had their handover and during that time we weren’t allowed to be in like the ward. So while they had their handover we’d go for breakfast and then we’d basically sit there until we were hungry and that was about the only time we’d leave is if we need the toilet or to get food. And we were normally there until sometimes ten, half ten at night so it was a long day but it was worth it. Couldn’t have done it any other way actually.

And you mentioned a couple of minutes ago that [partner] went home after she came out of NICU so how did you manage on your own all over 13 days?

I don’t know [laughs]. He came down every weekend so he came down on the Friday evening and went back on the Sunday night. That was, those days seemed to go a lot quicker than when he was there and it was amazing seeing them bond as well so because those first few days she wasn’t always aware of an awful lot she was on medication that was basically making her sleep some days so I loved it when he was back with us it actually made us, we were more like a family then rather than just me and he hated being away so we’d luckily with modern technology we could do facetime and stuff as well so, that was quite good.

Yeah.

Yeah I don’t know how I coped.

And did anyone else come down and visits you in those days?

Yeah, yeah I was, I did my training in [city] so I had friends that come, so a couple of friends during the week and then my mum came down at one point as well so.

Okay.

That meant a lot.

Juggling older siblings was tricky with a baby in hospital. Rebekah stayed at home looking after her two toddlers during the day, and then she and her husband drove the hours drive to the hospital every evening to sit with their daughter for a few hours. It meant she missed out on talking to consultants during the daytime and getting regular updates on her daughter’s progress.

Julie had a toddler at home, so after staying in hospital with her baby for 8 months, she started just visiting in the daytime so that her older child could go to a nursery.

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Julie had a toddler at home, so after staying in hospital with her baby for 8 months, she started just visiting in the daytime so that her older child could go to a nursery.

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Age at interview: 39

Age at diagnosis: 30

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I’d we stayed there until he was eight months and then we thought it was best for [eldest son] to, you know, be with his own kind so I walked dropped [eldest son] off, get up drop [eldest son] off at nursery at quarter to nine, go to the hospital spend a few hours with [son] and then come and get, come back get [eldest son] from nursery and go back, I would drop [eldest son] off at my Aunties and she would have him for the afternoon and then I would go back to the hospital. And then spend the time with [son] just doing ordinary things, you know, playing with him and I would bath him at night time and put him to bed and then [partner] my partner would come with [eldest son], he’d pick [eldest son] up and then they would come at about 6:00, half past six and would spend a couple of hours as a family. [Son] would be in his cot cos it wasn’t really practical at that time to take him anywhere. And then [eldest son] he’d get in [son]’s cot with him and, you know, just play once we put, did [son]’s bedtime routine and then we would leave him about 8 o’ clock and then take [eldest son] home.

*Footnotes:

Gastroschisis
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. A hole is present next to the umbilical cord through which the baby’s intestines protrude into fluid around the baby while in the womb, and outside the baby’s tummy after birth.

Neonatal Intensive Care (NICU)
A unit for critically ill newborn babies and infants who need the highest level of nursing and medical care. Babies in NICU often require support for their breathing. Those undergoing major surgery will often be looked after in a NICU.

Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.