Parents’ experiences of neonatal surgery

Living with uncertainty before and after neonatal surgery

For parents with a baby who needed surgery, living with uncertainty was something they had had to get used to, at every stage - from the first diagnosis, either in pregnancy or after their baby was born, through the anxious times in hospital, one or more operations and recovery after surgery. At no point were there any guarantees. For parents, the practical and emotional uncertainties were huge.

“I need to know what is going to happen to my baby….. Is my baby going to survive the operation?” Alison and Martin
“It was a waiting game” Amy
“We just don’t know what road he is going to take” Donna and Matt

Rare conditions

On the whole, the conditions that the babies had were rare. There is still more research to be done on the long-term outcomes for babies with conditions like exomphalos, gastroschisis, Hirschsprung’s disease*. So even though babies were transferred to hospitals with specialist pediatric surgeons, there were still uncertainties about their outcomes.

Donna said “the surgical team have been brilliant, and I wouldn’t want him under anyone else. I think they have worked wonders with him. But I think the feeling I get from it is that they don’t know themselves, so how can they tell us? I don’t think there’s enough research into this, into Hirschsprung’s*, for them to be able to say…”

Claire’s baby was in a specialist children’s hospital. Even there, they didn’t have all the answers about her son’s condition or prognosis.

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Age at interview: 34
Age at diagnosis: 33
Yes, I think that’s very true. I think the issue with exomphalos* and having that as a diagnosis is, there are so many, such a range of things that there can be problems with and I kind of talked a little bit about it before. But exomphalos is a reasonably unusual condition and actually, the consultants don’t always know, you know, what’s going on and, you know, even his general surgeon didn’t know and there were lots of times when they said, “We don’t know why he’s doing this. We’re not sure how to put it right.” And I think that was, to a certain extent, unexpected that even being in a, you know, the most specialist place we could be, they still didn’t have all the answers.

And they weren’t able to tell us, you know, whether we would find out whether there’d be another diagnosis just round the corner. And I think having internal anatomy which is kind of all the wrong way round, makes it very hard for them to run the standard tests and look at scans in a normal way. So I think it makes it really tricky for the doctors to be able to tell you categorically what’s going on.

* 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.
In pregnancy 

From the moment parents became aware there was a problem with their baby, the uncertainty began. If scans had picked up a problem such as exomphalos* or gastroschisis*, they were told their baby would need surgery, but doctors and surgeons often couldn’t give more detail than that. While they understood they couldn’t be given guarantees, parents still found this very hard to deal with in pregnancy. Claire felt she had been diverted off the normal pregnancy course. She couldn’t do any practical baby planning, as “it just felt too unreal, I think. I wasn’t sure that, you just weren’t sure what was going to happen so I preferred to just wait and see.”

Jane described how hard it was for surgeons to assess before birth what the baby would need, so it was very much wait and see. “The thing with exomphalos and I think something that parents find endlessly frustrating during the pregnancy, is that it’s actually really hard for them to assess things before the baby is born. So it’s very much, you know, wait and see, ‘this is what we’ll do in an ideal situation.’”

Alison and Martin found the conversation with their surgeon unhelpful. She knew that every case was different, but would have liked more information about what to expect.

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Alison: And that was exactly how she, how she put it. And we were taken back because we didn’t really, the sex was irrelevant at that point we didn’t want to know what it, what the sex was of the baby. We didn’t know that they were specifically looking for Downs so I was a bit taken back and I said ‘Oh well what exactly does that mean for the baby’ and she said, ‘Well, you know, it means that it’s not Downs Syndrome and, you know, it’s going to have an operation when its born.’ And it was a matter of, you know, ‘Can you give us any more information than that, you know, is the baby going to survive after the operation?’ and she said, ‘All operations are risky’. I said ‘Right’ I said ‘So do we go ahead then?’ and she said ‘If you want a termination I can arrange it.’

I think just more information on what they were going to do and what the outcome was likely to be and I know that’s difficult for them to say because every case is different and, but it would have been helpful I think to know that other children had been born with this condition and that, you know, what the outcome was with them. But we had nothing, we had no experience to fall back on, or nobody else’s experience given to us. So really it was, you know, before the internet and so we had very little information that we didn’t know an awful lot of what we were expecting, you know, we were just told that.

Martin: When people asked we said “oh it’s a hernia,” that’s what we were told.
Practically planning for a long hospital stay

While they couldn’t know the outcome, parents did know their baby was likely to be in hospital for a few weeks or months, which brought its own uncertainties and practical problems.

As well as her anxieties about how ill her daughter would be when she was born, Joe also had to prepare her older daughters for their new sister being in hospital, and their mummy being away from home for several weeks. 

Ally’s son was diagnosed with gastroschisis and she knew he was likely to be in hospital for a few weeks. So she had to plan for her mum to come and stay to look after her toddler. It was a big worry before the birth. After her son was born, surgeons could give no guarantees as to how long he was likely to be in hospital.

Joe described about how hard it was talking to her daughters about needing to be away after the birth, and preparing them for the possibility of their baby sister not making it home.

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Age at interview: 36
Age at diagnosis: 34
But delivery day came we were all desperately concerned that [Name], what [Name] would be like afterwards, I was as any mum would be was worried that I wouldn’t get to see her or touch her or, you know, would she be breathing would she, would she even be alive would she, yeah so that was, ……that was incredibly traumatic the time before, the build up to the birth the last few weeks were definitely much worse of the pregnancy than the rest.

Because of the anticipation?

Yeah it was, it was the, you know, we had a toddler that we had to prepare for me being in hospital for quite a while, they had initially said about four weeks if all went to plan and we would bring [Name] home and her paint and wait was the idea before she was born. so yeah we had a toddler to prepare we had how old was [Name], she was ten and, we had a ten and a half year old to prepare for mum not being here for this period of time and travelling to and from the hospital we had to explain to the children about what [Name] would be like after she was born we weren’t sure whether [Name] was gonna survive after she was born so we had to have the conversation with our oldest child about, about possibly not bringing [Name] home. After we’d had this big old pregnancy they could see I was pregnant and were very excited about me being pregnant we did have to have the discussions about not necessarily having the baby in the house to look after. So that was really difficult with the, having already had to tell them about the other twins not surviving that was, that was really stressful so, because there was no definite outcome and there was no definite ‘This is what we’re planning this is what we’re planning on doing with [Name] afterwards, this is how long it will take,’ there was no plan until [Name] was born, when they could see her it was just we have to wait and see. Which as a family when you’re trying to plan life and childcare and emotionally prepare your other children and the rest of your family and friends is really tricky when you haven’t got any answers.

Ally had to try and plan care for her toddler as best she could. She didn’t know how long she and her new baby would need to be in hospital.

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Age at interview: 37
Age at diagnosis: 37
Yeah because our family aren’t over here in the North West we had to plan for that, so that my mum could come over and plan with her to come over and basically just have [older son] she was originally going to be down for three weeks and then we’d see where we were at. I suppose the uncertainty was we knew there was a Ronald McDonald House we didn’t know if you could get it and you can’t pre-book it obviously you can only get a place once you, you’re in the unit and the nurses do a referral for you. So that did play on my mind what would we do if we couldn’t get anywhere that I suppose was my biggest worry. So towards the end obviously I knew I was going to get a date for my induction but I wanted that date so my mum could know when she needs to come down and just, and just plan from that day and have a few people on standby and things. Yeah it was just, as if we were going to get accommodation in [city].

And did you at that point have any idea how long it was likely to be, was it was anything between a couple of days and six months or had they given you a sort of ballpark?

No that’s the one thing they won’t commit to, and I don’t blame them for that because I think it is so unique to each child how long they’re gonna be there and what their outcome is gonna be that I think you would, you’d latch on to ‘You said it I was only gonna be here two weeks and I’m here three months later’. And they were quite open and said we can’t give you that information, I think even, and I think the message we sort of got about the nurses and the surgeons and the doctors experience with gastroschisis* is that it’s very up and down, you think you’re doing okay and you’re hitting a bad point and you might feel like you’re going backwards again and then you’ll go a bit further and that, that is true we experienced that luckily in a very short space of time and I’m sure it goes on for a lot, it can go on for a lot longer. But yeah no commitment to dates and we accepted that. I think in our minds we talked by about a month we would know what direction we were heading in and then be able to gauge a bit better cos it’s like things you’ve gotta think about like [husband] has to go back to work at some point. So yeah I think we’d set ourselves four weeks we might have an idea but certainly they couldn’t commit to anything and that’s fine but we sort of knew that was the case. You try if you can get the information but they can’t, they couldn’t commit to that.

* 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.

Zoe found it frustrating that she didn’t know when they would be able to live as a normal family.

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Age at interview: 24
Age at diagnosis: 22
No it wasn’t enough because it was very black and white it was a case of, these are the facts and no more like it didn’t give you any kind of timescale or anything and I think that sort of bothered me the most was we didn’t know when we could start living as a normal family being outside of hospital it didn’t really give any experiences of what could go wrong what can go right, there was nothing on that so I found that quite difficult. a lot of it was kind of like if buts and maybes of the amount of bowel the quality of it again, which I understand, it was just very frustrating it’s like being pregnant and not knowing what’s gonna happen next.
After Birth

While there are no certainties before the baby is born, there were not many more afterwards. Amy E’s daughter had gastroschisis and while it was clear she was going to be in hospital for a long time, everything else was uncertain. She found the conversation with her surgeon incredibly helpful. He was very matter of fact about the worst and the best-case scenarios.

Mary was in shock when her son arrived early and was sent for surgery. She remembers the specialist stoma* nurse giving her some reassurance during those early topsy-turvy days.

Amy E’s matter of fact conversation with the surgeon was just what she needed.

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Age at interview: 32
Age at diagnosis: 29
So he flew all the way back came straight to [specialist surgical centre] that evening and or the next it was early hours of the morning and he was really what I needed because he was matter of fact about it because at that point one of the nurses who had made a comment to me saying oh you’re gonna be in here a long, long time and I just thought oh I know that you don’t need to tell me. But because I just felt so despondent because everyone else’s baby seemed to be getting better and mine was getting worse. and there was no progress being made and I didn’t know what was gonna happen and the doctor he literally he was very calm, very careful about what he said, if I asked a question he really thought about the answer and I appreciated that’s what I really needed and he kept me calm at that point. I said to him ‘I really need to know what you’re gonna do,’ and he said, I said to him, ‘I’m gonna operate on her tomorrow morning but I can’t really tell you what I’ll do till I see her in the operating theatre.’ 

And I said to him ‘What is the worst case scenario, I need to know?’ and he just said to me ‘That she dies.’ And I said, ‘Okay what’s the best case scenario?’ He said, ‘The best case scenario is that I fix her bowel defect,’ cos he said I, he said to me ‘I might give it a go’ and see one bit of her, end of her bowel was really thick because all the bile had been coming in backing up and coming out of her mouth and the bit from that bit the break down to her bum was like a tiny, tiny, tiny thin tube like it would be attaching a really thin tube to a to a really fat tube, he said ‘I might try and do some kind of plumbing and spray it’ but he said ‘I can’t tell you I’m gonna do that until I go into the operation,’ and that would prevent her from having a stoma on. So those are the two, he goes ‘Oh the middle option is that I’ll get all her bowels back in sew her up and then we deal with that defect another time,’ but the fact that he was that matter of fact with me is what we needed, I didn’t want someone to tell me oh it will be alright or just not tell me the truth, he was really careful about what he said.

Mary found the conversation with the nurse very helpful in coming to terms with what a weird situation they found themselves in suddenly.

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Age at interview: 42
Age at diagnosis: 41
And, you know, at that point we were introduced to the stoma nurse and she very much also I think was the first person who I think kind of counselled, I guess it was really counselling, counselled us a little bit in terms of you’re in this kind of really, really weird situation where first of all you have a baby who was born a bit early, you haven’t really told anybody he’s born and then people who find out are like congratulating you and sending you their good wishes and asking you for photos and yet, you know, you’re kind of dealing with this. But we don’t even know whether we should be celebrating or what because we just really don’t know what's going on. And also almost terrified to give out messages because you don’t want to give out this kind of good and bad message either and she was, she was very good at just, just compartmentalising it and going you have a wonderful son, he’s perfect, he has a stoma* that’ll be dealt with. And it was very good about sending us away to kind of and dealing with it in a very positive way. And she continued to kind of be, be kind of a good contact point, not a good contact point but a good person to kind of bring everything together over the next couple of weeks.

* Stoma 
Surgeons may divide the bowel in an operation and bring the two ends out on to the tummy wall. This is usually a temporary situation to help the intestines or bowel rest and heal.
Faeces (poo) passes into a bag attached to the outside of the body.
Amy said the uncertainty really got to her. Her partner helped. “So it was always a waiting game and tricky because you want to know the answer, ‘When is my baby going to come home?’ And I guess that’s why it was really helpful that my partner was saying, ‘It doesn’t matter, you know. It’s just that she’ll get home.’ And I lost sight of that a few times and I needed to be, you know, that was really important for me to hear.” Victoria’s son was born very prematurely, and developed necrotising enterocolitis (NEC)*. She described the uncertainty as “hell”; sitting next to his cot day in, day out, not knowing if he was going to pull through. She knew that doctors couldn’t give her false hope, but she was desperate for someone to reassure her he would be fine.

Victoria was constantly looking for someone who could say, yes your daughter will be fine, but realised the doctors couldn’t reassure her, they didn’t know.

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Age at interview: 31
Age at diagnosis: 31
‘We’ll treat Bobby like he’s our, you know, we’ll look after him’ and, you know, having, it’s a horrible feeling because you can’t, when you have a baby, if you haven’t had a child before I don’t think you kind of understand it but when you’ve had your baby you want to protect that child more than anything, you want, and when you can’t and that control is taken away from you it’s awful because you see your baby poorly and there is absolutely nothing you can do about it and to sit there, you know, like I, I’m so lucky to have Bobby here today, you know, I know there’s parents out there that, that haven’t been as lucky as myself and [Partner] have been, you know, and you know, to sit there and think of losing your child is, is it’s awful, you know, me and [Partner] went through hell because we, we sat there and, you know, we were kind of like is he gonna be alright and we didn’t know, you know. That’s the thing when you constantly want someone to say yeah ‘He’s gonna be alright, he’s gonna come home’ and they don’t, I think that’s the most frustrating thing and they’re right too because they can’t give false hopes but, you know, you’re constantly looking for that person to go ‘Yeah he’s gonna be fine, you’re gonna take him home and he’s gonna be absolutely fine’ because they, they don’t know that.

And do you ask, do you ask the question and they say ‘I can’t tell you’ or is it just?

I think at first we did and like ‘is Bobby gonna come home’ and stuff, and then we kind of realised they, they can’t tell us that kind of information because they don’t know, you know, Bobby was very lucky to recover from NEC and, and come out with what he come out with and be here now so. And as I was saying there’s been other babies that haven’t been quite as lucky as Bobby but, you know, we, we’re very lucky that we had a very dedicated team. [Women and children’s hospital] were amazing they’re very busy, it’s a very busy unit and it’s hard for parents because the nurses change all the time, it’s very busy, the doctors change all the time, you know, but it’s, it’s very, it’s that’s the specialist kind of unit it is because they do take very poorly babies because they’ve got surgical there.
Uncertain surgical outcomes

Parents also had to cope with the outcome of their baby’s surgery being uncertain. They appreciated that surgeons had a difficult job managing the expectations of parents whose babies had such rare conditions. Joe said, “The surgeon has a very difficult job preparing you as a parent because ‘you are going to have surgery done on your baby, but I don’t know what I’m giving you back’.” He couldn’t say whether her daughter would have a full muscle and skin closure of her exomphalos or whether she would be struggling after the operation and need to be on oxygen support.

Sally-Anne and Simon knew that the operation was risky, and that their son might not survive.

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Simon: Towards the end of it we could probably have the qualification to become a nurse or a doctor yourself we learnt that much there and it’s, I mean even now when you've been you hospitals and stuff, there’s still a lot of doctors and nurses don’t know nothing about exomphalos’s* and they’ll still ask you, well, you know, what is it cos you start telling them and the way you talk, you talk like a doctor.

Sally-Anne: Yeah but the information was, I mean there was a lot, you know, they gave us that hope, I mean [name] his consultant he did always turn round and say, you know, I've got babies right to the very end and then I’ve lost them, you know, just you’ve all, you’ve still got that risk, he told us the risk of when he was taking him into theatre, he says, you know, he, you know, it’s a very, it’s a very risky operation, every operations got it’s risks so obviously we, with this type of operation it is a lot higher, he says but then, you know, he's seen many exomphalos baby’s different, different sizes, you know, small exomphalos, large exomphalos or, you know, whether it contained the liver or not he’d seen, he’d seen many before. But he used to refer back didn’t he to the other, to the other patients he’d dealt with exomphalos, he would say I remember so and so, so and so he had this problem as well and, you know, and it made us feel easier as well because we knew that he was in, he was in good hands and I think that makes it a whole lot better, you know, and it, it makes, it makes you feel more safe and secure.

* 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. 
Emotionally preparing

Parents found preparing themselves emotionally was very hard in the face of so much uncertainty. They understood that doctors couldn’t give them any guarantees, and some parents found it helpful to face up to the worst case scenario, that they might lose their baby.

Amy said that was her way of coping. “I had to look at the worst case scenario, like when she was in me and I still was, ‘She might die.’ ….Some people might be different, they might just think, ‘My child is going to live. I’m going to stay positive and optimistic and this is how I have to cope.’ For me I had to always think that she might still die, and it was horrible to hold that beside you. But for me, it would be the only way I could cope if she did. I had to be realistic, I guess.”

Jane looked into funeral arrangements for her daughter, as it helped her feel more in control. She had been told her daughter had a 50% chance of dying at birth. 

“I mean I know it sounds horrible, I actually looked into funerals and things like that, which sounds awful. But that just made me feel more in control because I couldn’t stand the thought of her just - I don’t know. Yeah, that whole thing just preyed on my mind an awful lot and I thought I had to think about that because it was a possibility. So rather than blanking it out I thought, you know, I did look into it and stuff and kind of put together a little plan just in case.”

Joanne’s daughter became critically ill when she was 10 weeks old. In the early hours doctors were unsure she would survive, and so Joanne and her husband had thought about funerals and called their parents to come and say goodbye to her. She pulled through, and is now 7 years old and attending junior school. But Joanna reflects back on that time of uncertainty.

Joanne was not clear what the future held for her baby. She has many times prepared herself for losing her daughter; looked over the cliff but stepped back from the edge.

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Age at interview: 41
Age at diagnosis: 34
I remember obviously lots of thinking that, you know, we really didn’t know what the future held at all, you know, she sort of seemed like she’d been saved I suppose the immediate, but I even remember then and this sort of touches me sometimes, over the years it has but you know, obviously at that point when we were sort of said they- you know they said we had to kind of think about whether we wanted to continue, you know we really thought we were losing her, you know, we really did, the thoughts of what you’re going to do at a funeral really do come into your head even though you shouldn’t perhaps get to that stage they really do. You know, and they obviously just sort of making sure that anybody who wants to come and say bye gets a chance and all of those things. And so when she had this reprieve I suppose, you know, when it was like well no we are continuing I think I still felt very much like yes but she is going to die and I’m going to have to watch her die at some point in my life, you know, she’s never going to outlive me. And so most of this is just prolonging that until that happens, you know, and I suppose at that point I wasn’t thinking it would be a long time I was thinking, you know. I remember thinking you know, she’d probably never go to main stream school, you know, even at that point these things kind of come into your head and so then I had a very emotional reaction, later, years later when she did start main stream school because it was very odd because I had just almost blocked that out like I would never almost allow myself to think past five it, you know, it was you know, the limits of what we were looking at, I mean obviously really you’re focusing on the day to day but there’s still bits of your brain that do, do that leap and, you know.

And, and so I was definitely thinking, you know, this is yeah very, very serious obviously they were saying it’s very serious as well, you know. At that point they said we might be in hospital a year for instance, you know, it was like you know, [husband] was trying to hold down a job I was on maternity leave obviously so I wasn’t worrying about that bit at that point. And yeah just lots of, yeah I suppose yeah it was, it was complicated because it yeah because say that part of me almost felt like but she is going to die it’s just a case of when and perhaps even I prepared myself, you know, even though I hadn’t obviously and I wouldn’t have. And so subsequently sometimes I felt myself almost like the way I’ve explained it is I’ve looked over that cliff I’ve looked over that cliff of losing your child, I’ve seen, you know, down there and then I’ve come back from the edge but I still walk very close to it, you know, so it’s always there almost next to me, I know there’s this sort of yeah one wrong footing and I’m slipping over that edge if you see what I mean. but so I constantly walk with this, with this fear that’s there of losing her and yet because she is doing so well now and, you know, she’s seven and whatever there were obviously times when that fades, you know, to the point where I won’t think about it for months perhaps, you know, and then maybe she’ll have a problem or, you know, I’ll have a concern and then that will bring me back or she’ll have to get admitted to hospital or something and then obviously that returns you back to the much more fearful stage. 
*Footnote definitions:

*Exomphalos, gastroschisis and Hirschsprung’s disease are all congenital disorders of the bowel. More information can be found in our 'Resources' section about research at National Perinatal Epidemiology Unit (NPEU).

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.

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.

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.

Surgeons may divide the bowel in an operation and bring the two ends out onto the tummy wall. This is usually a temporary situation to help the intestines or bowel rest and heal. Faeces (poo) passes into a bag attached to the outside of the body.

Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected. 
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