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Parents’ experiences of neonatal surgery

Travel to hospital & staying over when a baby needs neonatal surgery

Parents understandably did not want to leave their baby’s side for longer than absolutely necessary when they were in hospital. It was both emotionally and practically important to them.

Amy E said that leaving her daughter on the first evening was like abandoning her, “It still felt like there was an elastic band being stretched and I couldn’t wait to get back”. Amy said, “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.” Being away from their baby for even a few minutes meant they worried they might miss an important change in their baby, or a visit from the surgeon or doctor.
 

Michelle said that leaving her son on the first evening was really difficult. She wanted to be there for every moment and know everything that was going on with him.

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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 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.
But being able to stay close to their baby was not always easy. Not all hospitals can carry out surgery on babies with complex surgical needs as it is a very specialised task. The surgical staff and facilities needed are only available in regional specialist centres and these tend to be in major cities. Unless parents were lucky enough to live near one of the major centres, there was a lot of travel involved in being with their baby (see also ‘Impact on the family and friends as a child grows up after neonatal surgery’ and ‘Finances and working life when a baby has neonatal surgery’). Michelle and Harry were aware they were incredibly lucky to live close to a surgical centre. It was a few minutes’ travel from their home in London. There were families with a baby in neonatal intensive care (NICU)* who had travelled from as far away as Wales to be with their baby. Zoe lives in Scotland and her closest surgical centre was three hours’ drive from her home. 

Some parents travelled every day to be with their baby, others were offered accommodation in or near the hospital (see below). 

Travelling to visit baby
Daily visits to their baby were exhausting and took their toll on parents. They were especially hard for mothers who were recovering from caesarean operations and trying to express milk for their baby. Some parents didn’t have any choice but to travel. As they lived in the city where her daughter was being cared for, Barbara was not eligible for any hospital accommodation.
 

Barbara would spend most of her day at the hospital, and then go home in the evenings to look after her other daughter. She passed long hours by her baby’s side.

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Age at interview: 44
Age at diagnosis: 38
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Well they’ve got parent accommodation but if you live in [city] you’re not eligible for that so we just had to come home. So what we would do I would spend most of the day there and, I can’t, [husband] must have gone back to work at some point, I can’t remember maybe not, I can’t remember, but we were just, you know, we had to be home to pick up [older daughter] from school and so often [husband] would go up in the evening so I would come home and meet [older daughter] from school and do her dinner, he would go up in the evening and we just spent as much time up there as we could, but at the same time for a lot of that time that she was in, we weren’t actually doing anything we were there to look out for her you know, make sure that people were doing what they were meant to do which we didn’t always have a lot of confidence in, but mostly it was just sitting there. But I can remember, I mean if you’d said to me, you know to go and sit and watch a sick baby for six hours a day but somehow it just went by, I don’t remember feeling like time is dragging or and we would miss mealtimes all the time, we ate terribly because we didn’t really have a functioning kitchen at home as well, we really weren’t eating properly and just not feeling great, but it was just, we just got through it not with any style or applaud, we just muddled through.
Others, like Pamela, felt it was “easier to come home” to be with her other children. Rebekah’s third daughter was in hospital in her nearest large city which was over an hour’s drive away. She would look after her two toddlers during the day and then she and her husband would drive up in the evening to visit their baby.
 

Rebekah didn’t feel as though doctors appreciated what a mammoth ask it was to request to meet at 8am. They seemed to assume parents just lived down the road.

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So because we’d got the other two kids and they’re not at school or anything we had to sort of work around, and because I couldn’t drive because I had the caesarean and luckily my husband is self-employed so it just turned out that he was working for a relative at the time so we were really lucky that he didn’t actually have to be worrying about work. So we would normally go about our day like we normally did, put the girls in bed at about 7 ‘o’clock and then someone would come and babysit while we drove up to [city name] and we would get to [city name] anywhere between half eight or nine at night then spend a couple of hours with [Baby daughter] and then drive home again.

Gosh exhausting. 

Great fun.

It’s been horrendous so not that I was stressed but it’s the tiredness. I’d only had major abdominal surgery like just getting over that on your own is, you know, is great fun but looking after two toddlers as well and then not getting back home till sort of 1 ‘o’ clock in the morning at night after driving sort of constant, well my husband was driving at that stage. it’s exhausting so yeah I lost quite a lot of weight which I was happy with [laughs] but it’s the tiredness cos I think you just go into overdrive and adrenalin does kick in but there was, but if you stop, it’s when you stop that’s then if you sat down it was like actually I am absolutely shagged, yeah pretty bad. But apart from that you do just, you just carry on.

And you know, when, when a doctor or a nurse says oh can you get here for 8 ‘o’ clock tomorrow like the scrabble and the trying to organise everything at the other end because it’s, it’s not just, you know, a taxi ride or a drive away because you live down the road it’s pretty mammoth. So, so yeah it might sound like a just you make sure your here for 8 ‘o’ clock for the doctor when in reality that’s really a big mission sometimes.

Do you think they understood that?

[Sigh] I don’t know, they’re so busy Lisa that they didn’t understand [laughs] no I don’t, I don’t know, I don’t know, I didn’t even know if the doctors knew that I didn’t live in [city name], you know, I don’t even know if they knew that. But no, I made sure I was there the morning before the surgery.
 

Nicky’s premature son was transferred to a hospital closer to home, which was good news, but actually visiting him everyday was a “logistical nightmare”.

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Age at interview: 39
Age at diagnosis: 39
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And so you talked about being really isolating and those particularly those last weeks, how about when you finally got him home, how did that transfer?

It was just such a relief and it was just so much easier although it was just on high alert for any possible problem and setback because all we’d had was cycle after cycle of setback and problems we were just waiting for the next one and then we got it two weeks in but it was just so much easier. just like giving the medicines you haven’t got to go and find a nurse and say [son] needs to feed or he’s going to feed in the next half hour, I think he’s getting hungry can I have this medicine, can I have that medicine, can you warm this up or can you get that. you just did it and it was so much more relaxing, it was hard work everybody who has a new baby knows its hard work and the sleep was few and far between but it was just so much easier and the other big issue was the parking, the car parking and the physical battle to get to [local city], they’ve been replacing all the traffic, not traffic lights street lights on the road in and out and so it, oh every day it was, and fitting everything around expressing as well because up until he came home still expressing and it was oh I need to express at this time, the car park will be awful at that time, the traffic will be bad at that time so what time do I leave the house. And it would, every day as well as what time does [son] need to feed so that I’m there so that I can breastfeed him and not miss an opportunity to do that. So there was, everyday there was just that logistical nightmare but it was just like a cloak a heavy cloak. You wake up oh what time is it, what order do I do things, yes it was just so much easier such a relief to get home.
Several parents also mentioned the sheer logistics of finding a parking space at the hospital, quite apart from the costs of parking and petrol.

Staying with baby – by their bed

Some babies were only in hospital for a short while, so parents muddled through as best they could. Adam and Sonya’s daughter was in hospital for 3 days. While Adam wasn’t allowed to stay over, Sonya camped on the sofa near her daughter’s cot. It was uncomfortable and exhausting but they managed as it was only for a few nights. They felt it was a bit uninformed and unnecessary that Adam was not allowed to stay. “It was annoying I couldn’t stay as well”.

Other parents had a much longer haul. Depending on how ill they were at various stages, some parents were allowed to sleep with their baby in camp bed or private room. Jane was in and out of hospital with her daughter over time. The occasions when she had to sleep in a put-up bed next to her were “hell”. Noise and disturbance on the ward was a common theme for parents trying to sleep near the baby.

“I mean I’ve done it a few times when we’ve been put on wards or when she’s had an emergency and it’s just, it sucks your soul out and you never get a good night’s sleep.” Jane
 

Joanne was able to stay in a camp bed with her daughter who had short bowel after surgery for an emergency problem. She made the best of it, and didn’t like those nights when she came home to her own bed.

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Age at interview: 41
Age at diagnosis: 34
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So in the room I had the camp bed and we sort of had it down most of the time and I could kind of sit and cuddle her and I could have her on my lap and things and we could, you know, watch a bit of telly together and, you know, we could play a bit and she spent a lot of time lying down obviously. Nothing was coming out of her bottom at this stage at all, so no pooey nappies and so really the last pooey nappy had been on that day when she got sick, you know, it came out. I was still expressing at this point I think I expressed for three or four months afterwards, I was still saving it all in case she was able to have breastmilk down the gastric tube although she never really had any, maybe little tiny bits but that was it. 

I had not been out much we had a family grandparents, at one point my step mum set up a sort of rota for every third week, weekend each of them would come down so, you know, there was a grandparent down every weekend which, then they could sit with her and we could come home and so that, you know, we could both spend the night in our bed together and things like that, you know, and sort of. So yeah we did have a bit of support, well quite a bit I suppose support there and things and I did get out, I think if you don’t leave the ward at all it just became bizarre. But that first few times of leaving her I mean when they’re in intensive care you’re not sleeping beside them but after that, after high dependency we were sleeping beside her every night and you’re there all the time and the, it would seem odd to leave even in the beginning it seemed very odd leaving her and when I’ve had my subsequent children I know now why it was so hard to leave her because you’re not ready, it isn’t, it isn’t the right thing to do it’s an odd thing to do to leave the hospital and come home and be hours away from your baby that is a very strange thing to happen. 
Staying with baby – in hospital accommodation

Several parents were offered a room in accommodation (a basic room, hostel or hotel) especially for parents of sick babies, run by the hospital or charities like SSNAP (Support for the sick newborn and their parents) or Ronald Macdonald. The accommodation was often free, which made a huge difference as the costs of driving and parking mounted up for many parents. Parents described it as a lifeline or blessing and often stayed there for several weeks.

Amy said the hospital “hotel” was so important. It allowed her to stay close, and also have a little bit of normality. She was there for 5 weeks. “I got to stay in the hospital hotel, means the world. I mean honestly, it was, 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.” Parents really valued the possibility of having a normal bedtime routine with their baby, normal conversations with each other, other parents and ‘hotel’ staff, and being able to cook their own (basic) meals. Zoe valued being able to look after herself and get away from the ward, as well as being able to be close to her daughter. But there were waiting lists and some bizarre rules which added to parent’s worries at times.
 

Ally said the Ronald Macdonald house where she and her husband stayed for 4 ½ weeks was “amazing”.

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Age at interview: 37
Age at diagnosis: 37
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And what’s the Ronald McDonald house like?

Oh it’s amazing it’s basically like a hotel it’s free and you have a room which is like a Travel Lodge room, probably better and you can sleep up to four people in that room. They have kitchen facilities, lounges, play rooms for siblings, they provided all sorts of things you wouldn’t think of, obviously we were only there for four and a half weeks some parents are there, some of them were there for months They have hairdressers come in you can get alternative therapies stuff that just to give parents a break, they were thinking of all sorts of things and I think as well we probably didn’t use them to their full potential like I say we’re very much, we sort of just got on with it but I’m sure if you needed, wanted to talk to them or anything like that they would have sat and listened or got somebody for you to talk to. I think they could get help with the community to sort out paperwork or things like that an amazing charity, in fact two of my friends did a run this year the Great Run, no, Glasgow half marathon and raised money for them just because, I raved on about them that much they did that so fantastic if we hadn’t had that it would have been a lot more stressful, a lot more stressful.

Yeah and so you just basically moved in there for, what that ended up being for, four and a half weeks?

Just over four and a half weeks yeah I didn’t, we both moved in and initially we were both there and [husband] would come home every three or four days and see [older son] and then either bring him back or bring my mum and [older son] back so that they could come and see [son] but I just, I just stayed there I didn’t want to go far away.

Yeah.

And the beauty of the Ronald McDonald house in [city] is it literally is you walk out of their front door and the entrance to the children’s hospital is over the road, you are minutes away if ever you needed to be called. So you’re able to go first thing on the morning, you don’t put anything out like if I had to travel I don’t, I can’t imagine, that would have been awful.
Amy E lived two hours drive away from the hospital, and she said she couldn’t have survived without Ronald Macdonald house, which was a stone’s throw away from her baby. It “really saved me”.
 

Amy E stayed in the hospital house for 6 weeks, and found the staff who worked there like “mini-counsellors”.

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Age at interview: 32
Age at diagnosis: 29
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Well it’s about if I could drive it it’s at least two hours each way but then when you get to [specialist surgical centre] where do you park cos it’s just horrendous for parking but the first night I got discharged I went back to my mum and dad’s house in [borough] which wasn’t as bad but it still felt like I was abandoning my child it still felt like there was an elastic band being stretched and I just couldn’t wait to get back there it was just, no-one, everyone was trying to come round and see me that first evening I was like I don’t wannna talk to anyone I just want to go to bed so that it’s tomorrow and I can go back. But then the next night we got a, on the Monday night we got a Ronald McDonald house so, and that was just oh my God I didn’t know what I did until that point but without that place I would have gone absolutely mad.

And where, how close was that, was that in the hospital?

It was literally it’s a house outside the hospital, but if I stood at the front door of the house I could look up to the room her incubator was in, that’s how close. It took me, because we got called up a couple of times to come back quickly and stiches an’ all, it took me two minutes to get back there in my pyjamas, you know. So and we had a double bedroom with an ensuite and a shared kitchen with another family and it was just, I could not have survived without it and it was free and we had it there for six weeks. So and if I was trying to, I was looking into renting flats and my best friend lived in about 20 minutes away and she was willing to move out of her flat so we could live there, things like that, people were, you know, do anything to help you but you don’t want to impose on them. But yeah that Ronald McDonald place and also the people that run it they’re all like something like mini counsellors you come back at the end of the day and they want to know all about what’s happened and thy say don’t worry we had a baby last week and that happened and they’re better and so, you see all the inspirational stories on the walls and things so it feels like they know what they’re talking about. 

And they come round the wards every day, [name] her name was who runs it and, and just to see you, meet the baby and everything which is nice, nice little touch. But yeah the rest of it was, without that I really, really, really would have gone mad because I could not have faced going two hours backwards and forwards and I don’t know how people do when they’ve already got one child. Cos there was family rooms there as well, but the Ronald McDonald place have got new premises now close, another one close to the hospital with much more room so. But yeah so that was really good to have them in there that really saved me.
Staying with baby – juggling other children and work

Juggling the care of older siblings was often very difficult for parents when their baby was in hospital. It was a period of time that often separated families, with one parent juggling children at home and the other spending long days in hospital with their baby. Fiona found this made her feel guilty, “Because you feel so guilty the whole time.”

When the older siblings were in school or nursery there was no way around this. But sometimes the hospital accommodation allowed their older siblings to stay too. Parents really appreciated this, especially parents who discovered their child had Hirschsprung’s disease* after birth and didn’t have time to prepare for long hospital stays. Parents also appreciated when the hospital was supportive of siblings visiting.
 

Matt and Donna son developed Hirschsprung’s disease and was rushed to hospital in their nearest large city. They scrabbled to follow him with their young daughter, and appreciated having her around for distraction.

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Donna: And everything stops in a hospital over a weekend, everything goes slow, well time just so slow wasn’t it, it was and we were, we were very lucky to get into the [Name] House at the hospital so we could have our daughter there. I, on the Thursday he was transferred I came home in the afternoon my brother picked me up and brought us home cos, brought me home, and I remember sort of running round the house I had my brother, my dad and my friend here and I was just packing bags cos I didn’t know what was happening, didn’t know how long we were going to be out the house for. So it was sort of just get everything that I could and my friend sort of into my friends Fiat 500 which, bless her, she was sort of, yeah she was brilliant she, she sort of I just said, ‘Can you take us back to the hospital,’ we didn’t have a car seat we borrowed a car seat from the neighbour across the road that would fit into her car and literarily just filled it up with as much stuff, I just kept sort of throwing stuff down the stairs to come into bags and.

So you were packing to take your daughter as well at that point?

Donna: Yeah, yeah. We had no one that could have her.

So you were all going to the [Name] house?

Donna: Yeah. Yeah.

Okay. So how far away is the hospital from here?

Donna: Its’s about 15, 15 miles but it’s a nightmare to get to, in traffic the, the traffic coming out of here is horrendous.

Matt: Without the traffic it’s 35/40 minutes.

Donna: Yeah.

Matt: Thankfully we were doing at stupid times in the morning. Every time I’ve been it was stupid ‘o’ clock.

Donna: Yeah, so we packed, we packed her up and sort of everything that I could for us, and Matt stayed at the hospital with [Son] overnight because I couldn’t get up and down off the bed and I stayed with my little girl cos she’s-

Matt: A pain.

And it sounds like having the [Name House] there, is a real God send.

Donna: Yeah, yeah a blessing yeah.

Matt: That was also, I the, I mean even yeah the accommodation lady, she was amazing, wasn’t she.

Donna: Yeah the hospital family liaison.

Matt: It was very much our hour of need that Fri-that late Friday cos he got in late and stuff.

Donna: Yeah.

Matt: It was very much causing real panic.

Donna: Cos I was, we sort of said if we didn’t get into [Name House] on his operation day we’d, I said ‘Right I’m just gonna book the Travel Lodge across the road cos I’m not going home and I want [daughter],’ we didn’t have anyone really to have [daughter] overnight did we?

Matt: No not particularly.

Donna: And so I sort of said right well ‘I’ll be across the road in the Travel Lodge if I have to.’ and that’s sort of why we went down to the sort of family liaison department and said is there anything cos they were being, the nurse we spoke to initially didn’t put our referral through and there was all a bit of hooing and haaring as to whose referrals as to whether it was HDU or the surgical ward that he was admitted to first off sort of the where he’d gone down to theatre from. And so we were sort of like we’ve not got a clue what’s going on and so we went down to see them and she, that’s when she sorted us out the bed because she said I know [Name House] full at the minute. But they were, they were good and it was nice to have [daughter] there as a bit of distraction, bit of normality. Although, for her, she’s, she had the time of her life cos she got spoilt rotten.

Matt: She did.
 

Luke and Angie said the hospital were very supportive at allowing their two older daughter to visit their son when he was in hospital with Hirschsrung’s disease.

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Angie: What I will say though is that actually both NICU and the surgical ward were really good about our other children visiting Isaac.

Luke: Yeah they were brilliant.

Angie: They were brilliant. We were prepared for a fight with that we did, you know, we’d said to each other that actually we want them to be able to visit we want them to be a part pf his early life as well you know, and they need to be able to come and see him and, you know. And we didn’t have a fight, you know, they were, they were happy for them to come they were happy for them to come at any time of the day so they weren’t restricted to visiting hours and, and on NICU actually they even were happy for them for Grace who’s our oldest child to, to hold him. So, you know, she was allowed to have a cuddle with him on NICU even when he was, you know, I mean he spent some time actually on the ward in NICU and some time in a room with us but when he was actually on the ward they still let her come and give him a cuddle. So yeah they were, they were really good about that.
* Footnote definitions:

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.

Hirschsprung’s Disease
A rare disorder of the bowel, where the nerve cells do not develop all of the way to the end of the bowel. The section of bowel with no nerve cells cannot relax and it can lead to a blockage. Babies all need surgery and may have ongoing problems with stooling normally.
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