Parents’ experiences of neonatal surgery

Follow up and setbacks after neonatal surgery

We talked to parents who were at different stages along their baby’s post-surgical journey. While some were just a few weeks or months after surgery, others were looking back on experiences that had happened several years earlier. Some had relatively straightforward journeys after the surgery, but others had had complex paths involving lots of different specialists due to complications or the need for further operations.

Straightforward recovery 

While experiences in hospital might have been long and complex, some parents experienced fairly steady progress and follow-ups with their infant once they were home. Generally, after neonatal surgery there will be a period of follow-up with the surgical team as well as general paediatricians. Alix and Antonio’s baby had been born with congenital diagphragmatic hernia (CDH)* and needed surgery. By the time their son was 12 months old he just needed check-ups every 6 months, with either surgeons or paediatricians, following up the operation and his developmental progress, “looking at the scar generally and then just like a normal baby and his development and so on.” 

Complex care pathways

Some babies needed a lot of input from a wide range of health professionals even after they had been discharged (such as Nicky’s son who had had necrotising enterocolitis (NEC)*. As the months passed, the picture did become easier for some.

Nicky’s son was born prematurely and developed necrotising enterocolitis (NEC). At 10 months, she was still taking him to at least one appointment a week. She was looking forward to knocking a few of them on the head.

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Age at interview: 39
Age at diagnosis: 39
But he's still being checked out regularly by various people, it would be nice to just say “Come in if there’s a problem” but I know why they do and I know it’s very good but it’s part of the just being normal it would be nice to knock a few of them on the head.

So are those all checks that are happening through the GP…..?

No things that have been set up through the hospital or the health visitor rather than the GP so we don’t see, physically see the GP very much at all most of its other services, we’ve got speech therapists, dietician, physiotherapist home visitor consultant neonatologist as well as other check-ups on his eyes because of his eye problems and his ears just hearing tests. And then the surgeon at [city] the surgical consultant and the gastroenterologist consultant as well so.

So you’re still in that kind of follow up phase aren’t you?

Very much yes and a lot, I mean for the last six weeks or more we’ve just had appointments every week, at least one appointment every week. And he has to have an injection every month over the winter of an antibody to try and reduce the risk of him getting bronchiolitis as well because he’s classed as having chronic lung disease.


Having been ventilated for so long so they give them that every month to lessen the chance of them getting it and the severity of them of him developing it so it’s another, another appointment.

So you're travelling to [local city] quite a bit, to [city] a little bit?

Most of the follow up fortunately is actually [name].


So we only need to go to [local city] for eyes, ears and the antibody injection, most of the other things are [local city] sorry [name].


Which is much easier.

So at ten months you've got one appointment a week?

We certainly have done since, since the beginning of October its physio this week.

And you’re still on maternity leave?


But you could well not be couldn't you?

Oh gosh yes.

You could effectively use up six months yes.

Yes my friend went back at six months in mid-October, yes had I gone back at six months that would have been July, end of July he would have only been home six weeks, well not even that readmission at the end of June, we really couldn’t have managed that. And with his sleep he was still very unsettled at night really so it would have been completely unmanageable as well as horrendous emotionally to be going back to that and I know some parents have to do that and...

Thinking about the practicalities of, you know, juggling all of these appointments with, you know, if you had to be back at work as well.

Oh gosh yes especially if you were full time.


Very, very difficult and I'm hoping that by the time I do go back we’ll have got rid of a few in the nicest possible way, I don’t want to sound ungrateful because as I say the service and support we have is absolutely superb but yes it’s just nice to not have them really.
Depending on the condition, babies may continue to have very complex needs, even after the surgery. Claire’s son had exomphalos* and other complications. He was 18 months old, and she described a huge number of appointments. “We usually have two or three appointments a week for some doctor’s appointments. We see, obviously, his general surgeon, his ENT consultant. We also see neurosurgeons and neurologists and all kinds of people. But we also have physio, his teacher of the deaf, portage, dietician, you know, lots and lots of appointments. So it’s very busy.” Claire

Joe’s daughter also had an exomphalos and other complications. She has respiratory problems and needs oxygen at home, suffers from reflux, has also needed heart surgery and is on heart medication. When Joe filled in the form for disability benefits there were 21 different consultants on the list. For the first 8 months she couldn’t take her daughter out of the house for fear of infection.

Joe describes the day when the respiratory consultant gave her the green light to take her daughter out and about, but she still needs several appointments a week.

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Age at interview: 36
Age at diagnosis: 34
We’d been back and forwards to hospital to A&E since but mostly it’s just been living in the house for the first eight months we couldn’t take her out anywhere and then that golden day when the respiratory consultant said, ‘Well you can maybe go to a little baby club with some other little babies.’ I said, ‘really we can take her out show her other kids and show her she’s not the only one in the world.’ Yes so we went and he said, ‘Yes but only with a few babies and no toddlers,’ and I thought well where does that exist. Right so I can’t- he’s telling me I can take her out but I can’t really [laughs]. So we went to baby massage and our lovely health visitor organised the baby massage for [Name] with only a couple of other little babies instead of the great big classes that it normally is so that was really special, that was lovely although trying to do baby massage on a baby that has a great big exomphalos* there’s not much baby left [laughter] to do massage on, but she enjoyed it and it was positive touch and it was yeah it was a really good way of getting [Name] used to having, having nice things happen to her. So yeah the period between then and now has just been lots of appointments with dieticians, speech language therapists, paediatricians every few months at the surgeon for reviews every few months with a respiratory consultant for reviews back to the cardiologist for reviews. In and out of the GP surgery more than my GP would like because [Name] has had every cough and cold going yeah bless him he’s quite sweet he quite often just says when it’s me on the phone ‘Oh I’ll come and see you, I’ll come out on my house calls’ and comes out on his bike. Yeah we probably average about three appointments a week for [Name] so it’s busy there’s lots of people involved with [Name]. When I did her disability living allowance claim form there was 21 consultants on the list.

* 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.

Some parents experienced setbacks even after their baby was discharged from hospital. These were sometimes directly related to the surgery, but other times related to side-effects of their baby’s condition or unanticipated problems. These could feel even harder to deal with than the original surgery as parents hadn’t prepared themselves for them. Amy’s daughter had several surgeries for her exomphalos in her first three months, and then had been home for months. But when she had to go back into hospital, when she was a year old, for a minor hernia operation, Amy said “I actually found that harder, believe it or not, going back again….I found staying in hospital much more difficult that second time. I couldn’t wait to get out. I felt so much more antsy.”

Several babies developed hernias* which in some cases needed further surgery. Others had side-effects which made daily life worrying and miserable for several months, if not years. Alison and Martin’s son and Barbara’s daughter both had reflux for over a year  that caused lot of distress. Their condition improved as they got bigger.

Just as they were getting used to normal family life, Jane’s daughter started to get incredibly ill. It was a massive shock.

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I think we had a few months that were that were kind of seemed liked kind of normal family life I mean, you know. It was like, wow, that was a really full on experience. But you know, that’s over now and, and kind of, you know, get on with it. And then the next spring, so it was kind of the spring after she’d been born, she just started getting incredibly ill and we had suddenly massive dashes to the hospital with respiratory distress, and you know, having to call ambulances and just awful.

And I think, in a way, that was worse than the original thing because it wasn’t anticipated and while, you know, I found when I was on the surgical ward mixing with other mums that the ones that were in the worst state, emotionally, were the ones that hadn’t had a clue before the baby was born there was a problem.

And then, you know, they were expecting to take home a bouncing baby and then they were told, “Oh the baby has heart problems.” Or, you know, really tough. Well, I think I was a bit better because I was knew what was coming or I, you know, kind of knew what was coming and, you know, had anticipated the worst so anything above that was great. So, but yeah, so with the respiratory problems it was a real massive shock and also we didn’t know whether there was any solution to them. Well, with the exomphalos* we had always been told, you know, as long as the baby can tolerate it, we can fix this and, hopefully, he or she will go on and have quite a happy, healthy life.
But with the respiratory problems it was just like, well, what’s causing this, what the hell is going on? You know, it just didn’t, it came from nowhere, so that happened several times, well, a few times and, you know, she was in hospital a week here, a week there, you know, had pneumonia, just really poorly. And so that period was really worrying.

And presumably you were into a whole different set of doctors.


And specialists.


At that point.

It was respiratory team.


And, eventually, after this had gone on for a while, they said, “Look, we want to have a look down her lungs and see what, what, what the problem is.” And so that happened when she was, I think she was eighteen months, might have been a bit older. And we’d, you know, we’d had endless problems with, you know, a cold would end her up, you know, somebody would sneeze in the street and she would be in hospital two days later. I used to absolutely curse anybody who got ill, who came anywhere near her. So yeah, they took her in and had a look down her lungs and, basically, she had something called tracheobronchomalacia. So her lungs had grown thin and long because of, and her trachea had grown floppy, they think because she didn’t have the same support in her trunk below her diaphragm. So it kind of made sense for, you know, things had just [laughs] dragged down. But it meant that, when she got infections, or when hay fever impacted on her, which we discovered later was a problem, she’s also asthmatic, which we discovered later, it just meant those tubes were not coping at all with that.

Which, and it was great once we actually knew that because, basically, the team immediately put a programme in place. So it was like we didn’t, we no longer had to go, we didn’t have to do the calls to the ambulance people going, you know, going through the whole thing. We had immediate access to the emergency respiratory wards at the hospital with that. We didn’t have the ring a GP. We didn’t have to ring anybody. 

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.

Alison’s son had exomphalos and then developed reflux when he was a couple of months old.

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Started having problems feeding him it would take an hour an hour and a half to get three ounces of milk into him. He'd take the first ounce and then he would scream, just scream and he was obviously in pain he was drawing his knees up and it was obviously, you know, in a lot of discomfort. So I went to the GP and he said, ‘Oh it’s fine it’s just normal’ and I kept going back and then they said, ‘Oh it’s colic’ and I said, ‘It’s not colic, it’s not colic’ you know, and they said oh, they told me I was an over anxious mother because he’d had surgery and I needed to treat him as a normal baby and I kept saying to them there’s something wrong, you know, this isn’t right. He would wake up between five and fifteen times a night, he couldn’t lie flat he would scream and that went on for a long time. I think when he was about four months going back and going back and forth I think the GP then had contacted the unit and they said it’s possible he had a stomach ulcer and maybe that was causing the problem. So they put him on tagamet which was medicine they didn’t usually use for children and that did help, he was on gaviscon as well in his milk and it helped a little and then, you know, it would revert back and that went on for oh I think until he was about ten months, we moved, moved from [city] and going back and forth all that time. and we moved to the Midlands and they transferred him to [city] Children’s Hospital and they were fantastic they had him in straight away and they put a camera down and they diagnosed him with a esophagul reflux and they said his esophagus was completely ulcerated and because the sphincter valve at the top of the stomach wasn’t closing and the milk wasn’t going into the, into the stomach it was coming back out and all the acid was going on the ulcers and that was why he was screaming.
Some babies had to have a further surgery after discharge. Ally’s son was born with gastroschisis*. He had an initial operation and then another one when the membrane the surgeon had used to help close his tummy wall started to deteriorate.
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Ally’s son went back into hospital for a second operation and had an infection, but by the age of 7 ½ months he was discharged.

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Age at interview: 37
Age at diagnosis: 37
It must be brilliant bringing him home.

Oh yeah, strange in a little bit ohhh and of course we had this V.A.C. machine that sounded like a train chugging away as it, as it did the suction but no it was brilliant coming home.

So that suction was for his lungs or for his wound?

The wound yeah he came with this little machine in a man bag that we had to take with us with a tube attached and he ended up on I think three weeks until he then started, I’m jumping the gun here to this next phase but he started reacting to all the dressings that were on his skin went awful he smelt awful because his skin was irritated by all the adhesive. And then, it was working in closing this little hole that was there but Mr [name] had a look one time and he could actually see that the membrane had deteriorated underneath which it shouldn’t have done it did it earlier than anticipated it should have lasted about six months. And it lasted a lot longer probably about two and half well less than that, it started and, at that point I can’t put the V.A.C. dressing on cos that was a suction it could damage his bowel. So we had a week of seeing what that wound would do on its own but it, it just, it maybe got slightly bigger the hole so he said right let’s bring him back in and close him up.


In hindsight, that was probably not a bad thing because he actually took out all of that membrane so he’s got no foreign body in him now and he managed to stitch his stomach muscles together which he hadn’t been able to do the first time cos of that little gap. So he closed him up and that was really quite successful until two days later when we got home, I think it was on the third day and it became infected and then I actually took him to [city] Hospital then and we were in there for a week because it, he just needed intravenous medication, basically his stomach became so sore and it burst and all that [blegh] that came out.

So that was the second surgery that you went back in for?

Yeah the second surgery in [city] I think that was end of June so he’d been about three weeks of this if the V.A.C. dressing if not longer but it became quite that was probably the most stressful period in a way because I wasn’t sure if when it became angry and the dressing started slipping off a bit and things, whether that was infection or what was going wrong. So one week we were at [city] five times because there was no point me taking him to [city] because they couldn’t deal with the vac dressing they would have just sent me to [city], we did have a link at [city] we had open access to their children’s units as part of our discharge from [city] but I think I rang them once and they were just sort of like ‘Oh no send him send him to [city]’, so we just said we’ll just go there and present to A&E and then and if Mr [name] was on he would come and see him. Or if one of his team they would see him or I’d be going to a scheduled appointments to get the dressing changed. But it was just I, because I didn’t have the knowledge and nobody else who came, we had neo-natal nurses coming out as well from [city], they were lovely and they even came out extra when it was getting red and angry and I just said, ‘Look will you come and have a look at it.’ But again they would, they would err on caution and say can you get to [city]. But luckily I mean I feel like I pestered the life out of the surgeon, I would send pictures to his secretary of his tummy and then she would pass it on and then Mr [name] would come back and say ‘It’s just irritated don’t worry it will be alright I’ll see you at his scheduled appointment.’ So that was really good in that I didn’t have to go all the way to [city] for no reason and waste his time as well, so that was really useful.
Accessing hospital after discharge

Accessing hospitals and specialists after their baby had been sent home could sometimes be frustrating. The surgery often happened in a specialist paediatric surgical unit that was not necessarily their local hospital. So when problems came up once they were home, it was hard for parents to know where to take their baby, or find staff who had the expert knowledge they needed. Mary felt that her son was “falling between two systems” as his operation took place in a different hospital to the more local one where they were due to have follow-up appointments. Some specialist hospitals or children’s wards gave parents an open invitation to contact them at any time, and in some cases, parents were able to email their baby’s doctor to ask questions. In Jane’s experience, “The hospital have always said, you know, whatever discipline, the door is still open. So they’ve never had any problem at all with me emailing them and saying, “Can you just clarify this?”

Alison felt that her hospital had the surgeons for the exomphalos operation, but didn’t really know how to investigate her son’s ongoing problems.

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Yes I think maybe that was the case, I don’t think they knew what to do with us in [city] really and you know, they, you know, they obviously have the surgeons to do the operations and whatever but they didn’t seem to have the knowledge for the follow up problems. but when we went to [city], you know, straight away they, they sort of had him in and you know and he was so poorly as a baby it wasn’t just the feeding, he picked up anything that was going so he had constant chest infections, constant colds, he had gastroenteritis where they wanted to hospitalise him because he was so poorly with it and, you know, it was just one thing after another. And even when we went to [city] and they wanted to have him in to put the camera down twice, three times, it was the third attempt because the two previous times he'd been too poorly with a cold and a chest infection to actually have that procedure done. So he was just obviously a very poorly baby, he was just his immune system was low and he was picking up everything up. So it was just constant with him, you know there was always something, he had bad eczema or, you know, there were lots of other issues and I think, you know, I think at [city] they just thought oh well you know I was being over anxious and, well, they told me I was being over anxious. And I was adamant that I wasn’t, I knew that there was something wrong.


I just really felt that they didn’t listen to me until we went to [city] and we met Mr [name] and he, he sort of said right, okay we’ll get to the bottom of it. And that was when they had him in overnight and they put the camera down, put a probe and measured the acid in the esophagus and that all came back abnormal, so and then they put the camera down.

Amy E felt abandoned when she took her daughter home from the specialist centre, and was told to just go to the local hospital if her daughter developed any problems.

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Age at interview: 32
Age at diagnosis: 29
The main thing when I got home was I just felt a bit abandoned because I was here as well no-one here really knew I was back and no-one and at [specialist surgical centre] I just had the normal appointments so it was like just go back to your GP but I didn’t, shouldn’t have been, my GP didn’t know what to do cos she was ill. They were really brilliant and they, my GP’s surgery like because I’d been told leaving [specialist surgical centre] oh, you know, she’s at more risk of her bowel being distended and swollen, blockages because her bowel’s been put in where we wanted it to go, rather than nature so if she’s sick or she doesn’t go to the toilet you need to get her to A&E well she’s a baby so the amount of times I’d phone up and say I don’t know what to do and if you phone 111 or anyone like that and say she’s got this bowel condition she’s had bowel surgery and she’s not pooing and she’s being sick every time they say bring her to A&E, so you bring her down to A&E and they look at her and they go oh take her to [main local], cos you take her to [local] take her to [main local] and they go oh yeah I think she’s alright I think it’s just a virus and you’re thinking I knew that in my heart but you just don’t quite know. But my GP surgery are great they just say bring her round and we’ll check her tummy, check her tummy and listen to it and see if its’s alright. So that was good having them here but I don’t think, it was me doing that rather than anyone else pre-empting that. I did have a health visitor come and see me when I was here cos I called up and said I don’t, aren’t I supposed to have someone come round I don’t know and they were like oh yeah, yeah we’ll send someone round and did the normal kind of does your husband beat you up kind of questions [laughs] obviously not.
Open Access

Being given open or emergency access back to the team who had looked after their baby, without having to go through A&E first, was really valued by parents. When Jane’s daughter’s respiratory problems were finally diagnosed she was given emergency access to the hospital’s respiratory wards. “Once they knew what the problem was… this emergency access thing was brilliant.”

Luke and Angie described a really good open access policy for their son who had Hirschsprung’s disease in their local hospital, which was also a specialist surgical centre.

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Luke: And the, they’ve done a, because Hirschsprungs* is quite a messy condition and, you know they’ve issued, they’ve started, the Hirschsprung nurse got them to issue little cards that goes Hello I’m a baby with Hirschsprungs please call the consultant immediately and take me straight in, you know, so if you do need medical treatment you can bypass the whole going into the waiting room and waiting to be referred.

Angie: Which a lot of other parents - 

Luke: They have, they have a really good- 

Angie: Across the country have to deal with the have to go to A&E and then they go.

Luke: They have a really good open bed policy with Hirschsprung’s here so what it means is, is even now if he had a problem we can phone up the ward which deals with him and the specialist there and say, we’ve got a problem can we bring him in and be seen and we can go straight onto the ward as opposed to having to go through the whole admission process.

* 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.
*Footnote definitions:

Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.

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. 

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.

A hernia occurs when part of the body (usually the intestine) protrudes into a place where it should not be. An inguinal (groin) hernia in babies happens when a sac that joins the tummy to the scrotum or labia does not close, allowing the bowel (or ovary) to bulge into it.

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.

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.
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