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Parents’ experiences of neonatal surgery

Understanding the diagnosis when a baby needs neonatal surgery

It could feel overwhelming when parents were first given the news of their baby’s diagnosis, whether during a routine scan in pregnancy or after birth. Some conditions needing surgery after birth are relatively simple, such as a hernia (e.g. Adam and Sonya’s daughter), but others are rarer, more complex and may have poorer outcomes. Parents were often in shock at the news, as they faced a very uncertain journey, as doctors and surgeons were unable to predict what the outcome would be for their baby. 

Claire described being in “floods of tears and very upset when the midwife was talking to us in the bad news room”. Amy said she went home “not knowing what to think - what does this mean?”
 

Amy E felt she wasn’t given as much information as she would have liked about her daughter’s gastroschisis*. It was a case of waiting and seeing, if her daughter’s case would be straightforward or complex.

Amy E felt she wasn’t given as much information as she would have liked about her daughter’s gastroschisis*. It was a case of waiting and seeing, if her daughter’s case would be straightforward or complex.

Age at interview: 32
Age at diagnosis: 29
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Do you think that was a help, did you have enough information before she was born?

I did feel like a lot of the time it was we can’t really say much, can’t really tell you much you just have to wait and see. Yeah more than, they probably could but then I can understand why they telling you too much, too much knowledge can be a bad things sometimes. So if we’d had a normal case of gastroschisis* I would have probably said that’s fine but because we had a really complicated one then it didn’t prepare me enough, but I wouldn’t have wanted to be prepared if I wasn’t going to have that outcome, so it’s a bit odd really, but yeah it was good seeing the consultant surgeon before, it was good seeing the neo-natal unit. I didn’t know about Ronald McDonald house if I had known about that perhaps that would have made me feel a little bit less anxious because I live so far away I was constantly thinking what am I gonna do, I don’t know, just, you know, so that probably, selling that more. And I was speaking to [name] and the people, women in there McDonald, I think it’s slightly changed now, couldn’t at the time publicise what they do because they can’t be seen to be gaining from a charity.

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, 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.

* 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.
Why information was important

Information came from many different sources; doctors, nurses, Internet sites and support groups, academic journals and even TV. Parents often felt powerless, both during pregnancy (if diagnosed before birth) and once their baby had been born. This meant information gathering was a way of feeling they were actively doing something for their baby and family, and a way of counteracting their feelings of isolation and powerlessness.

Amy described herself as a “mamma lion” fighting for her daughter, “I mean I had research, research, research”. Claire and her husband went for extra scans and a second opinion after their son’s diagnosis of exomphalos*. “We weren’t sure what we were letting ourselves in for. We weren’t sure what the outcome would be for the baby and I think we felt we owed to [son] to just have all the information possible.” It was also a way of feeling more in control and coping with their anxiety. Parents wanted to know about others experiences, to hear stories of positive outcomes. “We were powerless to change anything other than get lots of information.” Pamela’s son was born prematurely and she was “desperate to find, and never did, some sort of account or blog of a story of some baby who’s had every single problem that [son] had and turned out fine… I just needed to know about it.”

Information overload

Parents found it hard to take on board all the information at once, and needed time to understand and process what was happening to their baby. 

“The first time when you are having the conversation on day three you don’t even know what to ask, so it’s all a bit like ‘boom’.” Mary

“It is one of those things that I think they could explain it perfectly sort of slowly taking their time with you, explain everything and you still wouldn’t - we were a bit sort of, we weren’t really sort of frantic or flapping but we weren’t in a mode to be taking on information at all, were we?” Adam

Information from health professionals 

On the whole, parents felt that information given to them by the hospital (often in the form of a short leaflet or handout) was not broad enough about what can go right and what can go wrong, and couldn’t give them all the information they wanted about outcomes. Often health professionals were not able to give much information because the conditions were so rare and outcomes so different for each child (see ‘Neonatal surgery- parents’ experiences of communication with health professionals’, ‘Living with uncertainty before and after neonatal surgery’). So parents went out and looked for more on their own. They were searching for both facts and figures, including long term impact, complications and rates of success from surgery, as well as the lived experiences of other parents or babies. Matt and Donna went home and did their own research into baby’s diagnosis with Hirschsprung’s disease*. “There hasn’t been a huge amount of information coming from them”.
 

Rebekah would have liked more information, and wished she had had a conversation with the surgeon who could have given her some medical terms that she could then go and look up.

Rebekah would have liked more information, and wished she had had a conversation with the surgeon who could have given her some medical terms that she could then go and look up.

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And you said that you didn’t do any googling or anything you resisted the temptation to Google? Did you feel that you’ve had enough information through this period?

Not really I don’t know, I, this is why I want the medical terms from doctors so I could look it up myself yeah I don’t know I think it would have been good but the surgeon I spoke to just before her surgery and after was very, very good on the phone she went through a lot of things, I asked her a lot of questions and she did explain things very clearly and in great detail, which is what I need just to, you know, to sort my head out. but apart from that, no doctor or surgeon sat down in person and explained to us what was happening or going on so, unless you went on the internet and read things and actually because I’d been on the internet and read things I did come up with questions to ask them so yeah. I mean surgery’s pretty major within the first day of your life I think it would be good if, if a doctor or a surgeon actually sat down with you and talked you through some things and, you know, yes it’s not easy cos we I’ve here but we would have dropped everything to go up if someone had said right got an appointment to speak to the doctor at 10 ‘o’ clock it will only be for 20 minutes but, you know, you can fire anything at them but that didn’t happen.
 

Vanessa felt she was given enough information, but not too much. She appreciated that they couldn’t answer all her questions immediately.

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Vanessa felt she was given enough information, but not too much. She appreciated that they couldn’t answer all her questions immediately.

Age at interview: 31
Age at diagnosis: 30
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And did you feel like that kind of the information that they gave you at that meeting on the Tuesday, did it answer all the questions that you had then I mean surely they couldn’t answer all your questions but.

To an extent, yeah I mean it was hard because obviously I was quite emotional about it but the surgeon who actually did his operation in the end he was the one who come and told us he like drew a diagram to explain what Hirschsprungs* was obviously I’d never heard of it and like I say I was always thinking they’re gonna come back and say yeah he’s fine there’s nothing wrong with him. and yeah the other nurses who had been doing his wash-outs they were there and it was another surgical nurse who was there who you kind of got to know anyway but yeah they gave us this information sheet straight away to tell us what it was and they gave us like a medical alert cards so that look out for like the warning signs of him having infection. Yeah they weren’t, you know, they gave us enough information but not too much because I think they obviously realised that, you know, it’s early days but they had to highlight the seriousness of it and that, know if anything if he was showing any signs of anything you’re to bring him back basically.

More or less yeah, I mean the thing we’re finding with Hirschsprungs is they’re not, they can’t really give a straight answer because there’s a lot of unknowns about it so yeah we did have questions and, you know, they answered them the best they could and to be fair they, you know, he was quite realistic with us he said, you know, what we’ll do is test his portions of his bowel while we’re doing it and see how much is affected to see how much needs to be removed but it may or may not be, not successful, he said we will remove it regardless but he said different outcomes, you know, it could, he could still have problems going he just said that we just don’t know until, so yeah it wasn’t, it certainly isn’t like yeah we’re having this operation and he’s going to be fine after that, it was like yeah he’s having this which needs to be done because that bit of his bowel doesn’t work so it has to be taken out and but we can’t really tell you, you know, how he’s going to be afterwards. So there was that, but you know we just accept that, we still do now like he’s alright at the moment but we know that he could, I don’t know, different things could affect him as he grows and just, you know.

* 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 (pooing) normally.
But being able to talk to health professionals, whether they were the doctors, surgeons or nurses involved in their baby’s care, was really important. “I got the information I needed, I was getting the information from the staff on NICU and the surgeons and the doctors, and that was enough for us.” (Ally) Often conversations and support from specialist nurses were a real help.

Surgeons may draw diagrams for parents, and this can really help parents understand more about their baby’s condition and their surgery.
 

Mary said she found the conversation with the stoma nurse was really useful in helping her understand her son’s surgery. She felt she needed a basic biology lesson.

Mary said she found the conversation with the stoma nurse was really useful in helping her understand her son’s surgery. She felt she needed a basic biology lesson.

Age at interview: 42
Age at diagnosis: 41
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The first time when you’re having a conversation on day three you don’t even know what to ask so it’s all a bit like boom, it really is because I think especially in something like you have just no, no experience of and like, you know, I remember thinking large bowel, large bowel large intestine, you’re like, you know, I hadn’t, you know, I haven’t heard this since biology in school kind of and so you’re kind of, you going kind of right back and then so the fact that somebody actually takes out the, the brochure with a picture in it and goes this is what happened this is roughly where his stoma is, they're showing them on the little, you know, picture of a child with the intestines, a bit like a kind of a secondary school biology text book. But you kind of have, you kind of have to do that. And I thought, I think that's where I found probably the conversation with the stoma nurse probably a little bit more useful because you actually needed somebody to give you the biology lesson.
 

Nicky said she really appreciated the clear diagrams the surgeon drew for her. It helped her understand, and be able to translate it for her family.

Nicky said she really appreciated the clear diagrams the surgeon drew for her. It helped her understand, and be able to translate it for her family.

Age at interview: 39
Age at diagnosis: 39
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I don’t think there was anything that didn’t get answered because the surgeon was very good and the other thing that she did was she tended to draw diagrams I can’t remember whether she did before the surgery but she certainly did afterwards to show us what she’d done and what she thought the problem was and, and that was really, really helpful to see it visually [laughter] as well as hearing. Although I knew what she was saying I understood because I know the gut and the anatomy and that was an advantage again that I'd got that background it was I always kept thinking if I hadn’t got the background that I had it would be so much harder because I wouldn’t understand I wouldn’t know anywhere near as much so it was nice to have that background most of the time. But even so it was nice to have it clearly drawn out so you could see and to show other people as well so that they could appreciate what had been done.

Yes absolutely.

Because you explain it to them and translate it to family.

[husband] hasn’t an anatomy background has he so?

Not huge one but he’s, he picked up an awful lot [laughter].

Oh I bet yes.

Yes, yes.
Information from the internet

Most parents went online to find out more about their baby’s condition and surgery, although they were often warned not to by doctors, or to only go to trusted or respected sites (such as Victoria who son developed necrotising enterocolitis (NEC)*). Parents described finding helpful information on specialist hospital websites or other condition specific charity websites and also parent forums which were full of information and experience (see ‘Meeting other parents when a baby has had neonatal surgery (online and face to face)’).
 

Fiona and Mike said the first thing they did was go online. It took a while to get beyond the facts and figures and find parent experiences too.

Fiona and Mike said the first thing they did was go online. It took a while to get beyond the facts and figures and find parent experiences too.

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And where had where had you gathered your information from during that week? I mean you’d obviously been told some details in the hospital.

Mike: It was very basic information there and then really I think the first thing we did was we went home and had a look online.

Okay.

Mike: To try and find out where that information is because we didn’t know where else really to look because the only, the appointment we had at the next hospital, which was a week away later, that was the one where we were going to be told everything about it all.

Yes.

Mike: So meanwhile, you can’t help but try and find out more.

Yeah.

Mike: Yeah and statistics, it’s all statistics and medical the ways of dealing with the situation and it was all a bit cold and black and white. There’s no real experiences on there that we found, initially.

Yeah, so that was in that was a few years ago, wasn’t it.

Mike: Yeah.

In two thousand and six.

Mike: Yes.

And so what sort of sites were you looking at? Can you remember in those early days, where you managed to find information?

Mike: Just.

Fiona: It was medical publications wasn’t it, I think.

Yeah.

Mike: Yes, it’s all the medical information so you Google the name and that’s all that really comes up and most of it dated back to the mid-eighties.

Fiona: But then we did come across GEEPS and that.

Mike: Yeah.

Fiona: Helped to see the experiences.
 

Despite warnings, Victoria went online when her son was diagnosed with necrotising enterocolitis (NEC). She found mixing online research with what staff were telling her was helpful.

Despite warnings, Victoria went online when her son was diagnosed with necrotising enterocolitis (NEC). She found mixing online research with what staff were telling her was helpful.

Age at interview: 31
Age at diagnosis: 31
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Well they told us not to Google from day dot, it was like ‘Don’t Google’ but you do. When Bobby got NEC we Googled and wished we hadn’t cos it was just like, oh goodness, made us worse. But the hospital gave us a lot of information they gave us like when, they gave us this pack when Bobby was first admitted onto [smaller hospital] when he was first born with different things in. There’s like a BLISS group that you can go through, there’s all different types of places you can get support from but you’re better off getting like from BLISS or from actual support groups that are kind- and that you know are proper support groups. You know, and talking to other parents on the units, nurses that, you know, that was quite good to get that kind of information from. So yeah, there is information out there but it’s the right information because when you Google you get, you get forums where people talk about their experiences but it’s not necessarily, every baby’s is different, you know, there’s like a lot of babies do get reflux but every baby reacts on different medications differently so you can talk to forums on what worked for you but that’s not necessarily might work for somebody else but, you know, it’s there’s lots of things out there really it’s just looking.
Barbara was wary that what she found online might be frightening because she felt people online are often the ones that might have worse outcomes. She, like others described the dangers of searching on the internet. She felt that parents only post when bad things are happening.
 

Barbara went online and saw some heartbreaking stories. She decided she would be better off not looking any more, and taking it one step at a time, and see what the doctors had to say.

Barbara went online and saw some heartbreaking stories. She decided she would be better off not looking any more, and taking it one step at a time, and see what the doctors had to say.

Age at interview: 44
Age at diagnosis: 38
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So, you know, they told us as much as they could they were nice but we were just reeling really and I came home and I think I had I had something the next day, something important workwise, so I just e-mailed my boss to say look we’ve had some bad news and I’m not gonna make it and then just went on the internet and started trying to find out, cos it wasn’t something I’d ever heard of and of course then you go on the internet and this is why I was keen to do this, because it’s quite frightening what you see because of course the people who go on the internet with the long detailed stories are often the people who have had the worst outcomes because the people with good outcomes just get on with looking after their baby, you know. So there was some really heart breaking stories on there, so I made the decision at that point that I didn’t want to know anymore and that I would just we would just go through it one step at a time and we would we would just see what the health professionals had to say and stick with them and whatever they said. And but it just so happened that the next day that I had my appointment with the midwife, you know, they wait for you to have this scan and then they book you in do all your bits and bobs, and so I had an appointment with her the next day and of course she’d been told and she was just wonderful I still feel so warmly about her and I’ve seen her, and I’ve since and told her so.
 

Zoe said she found information was limited, but she was also wary of looking at forums because they don’t paint a true picture.

Zoe said she found information was limited, but she was also wary of looking at forums because they don’t paint a true picture.

Age at interview: 24
Age at diagnosis: 22
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I don’t know the reason I found it hard was that information you were given was so limited it was just once source so there is no comparisons and we didn’t want to read forums because forums are just never good about anything. cos they don’t always paint a true picture it’s just somebody’s personal opinions but I feel now I have done research and looking back at other people’s stories I think we were treated in a really good way in the fact that my pregnancy was monitored so closely I was told everything to watch out for while I was pregnant towards the later stages we were warned about inducement was from 34 weeks so I was so focused on every week from that point on and I think the fact I was induced at 37 weeks was a massive key part as well, I’ve heard about other babies being induced too early, too late and the damage that can have. So I think, I think that was a major part in how she survived so well and has been thriving ever since.
Avoiding the internet

Other parents said they avoided looking at the internet and wanted to just go through their own experience step by step. Rebekah said, “I’m normally a big Googler but when she was in hospital I just thought I’m not even gonna Google this stuff, because I’m just gonna deal with it as it happens.” Amy E didn’t look online as she was wary of what she would find about her daughter’s diagnosis with gastroschisis*. But her mum did, and sent her a link to a YouTube video with a good outcome.
 

Leanne steered clear of online support groups and forums, as she thought the extreme cases she might see would worry her unnecessarily.

Leanne steered clear of online support groups and forums, as she thought the extreme cases she might see would worry her unnecessarily.

Age at interview: 36
Age at diagnosis: 36
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We’ve steered clear of them for the reason I mentioned earlier about just it seems to be very extreme cases that that use support groups and there’s every chance that [daughter]’s a really mild case and I just think that if I learn about all the things that an extreme case can suffer from I’m just going to worry that she might experience those things herself. So when I went to that, the bowel research group thing recently in Birmingham I did, I was aware I think that I was the only parent in the room that wasn’t part of some kind of support group and I did think maybe it would be helpful. But they did talk about a day out for all the children with bowel issues, I just don’t know if it’s for us because I think I’m really hoping that [daughter]’s going to lead a very normal life and I don’t, I just don’t know whether taking her for a day out with children that have really severe bowel issues, I see that there’s support in it but I think maybe, I don’t know, if it’s for us. Until I know if she is a severe case further down the line then maybe she would get something from that but I want her to feel as, I don’t like to use the word normal because other people don’t like it but I want here to feel as normal as possible and I don’t want to focus on that too much.
 

Nicky said she was wary of where she looked for information online, and recommended relying on the doctors and nurses looking after your baby for information.

Nicky said she was wary of where she looked for information online, and recommended relying on the doctors and nurses looking after your baby for information.

Age at interview: 39
Age at diagnosis: 39
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I don’t think so, although I suppose when you say what would you say to other people and about the information aspect, yes just be careful where you look for the information and really use the medical teams that you're working with for your source of information as far as possible and probably the BLISS charity I’d recommend, they've got a lot of useful resources on their website as well. Yes probably just be careful, I can remember one mum who was getting really worried because her son wasn't doing so well, his oxygen requirements had gone back up again and she didn’t understand why and she wasn’t really saying to the team that she didn’t understand and she wasn’t asking them to explain it again because she hadn’t understood it the first time and that was causing her some anxiety, so make sure you do understand because it’s so important and I’d really encourage people to use the, the nurses and the medical teams as their source of information because there is a lot of worrying information out there that can make a worrying stressful time even more difficult.

Yes, yes. Thank you.

So yes so just you were just telling me about the importance of being careful where you look.

Yes, yes I definitely encourage people to talk to the medical; team the doctors and the nurses who are looking after their baby, their child for the information get as much information from them as possible and if you don’t understand it ask them to explain it again be very careful where you look online there are some very useful places but there’s also some places that are less helpful so just be very mindful of where you are looking if you’re going outside of the team. 
*Footnote definitions:

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.

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.

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.

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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