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Parents’ experiences of neonatal surgery

Mary

Age at interview: 42
Age at diagnosis: 41
Brief Outline: Mary was expecting her first child. He was born by emergency caesarean at 37 weeks and needed abdominal surgery when he was a few days old.
Background: Mary is married. She works in the banking sector and has one son.

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Mary was pregnant with her first child. The pregnancy went well until she developed abdominal pain in her 37th week. She went to hospital to have it checked out, and doctors suspected she was having a placental abruption* and delivered her son by emergency caesarean. Although he was initially well, when he was a few hours old, doctors became worried about his blood sugar levels and he was transferred to neonatal intensive care (NICU)*. He was unable to keep his milk down and his stomach was becoming distended. At two days old he was transferred to another hospital in the same city that had a specialist paediatric surgery unit. He had exploratory surgery when he was three days old, and a stoma fitted. Although doctors performed lots of tests and ruled out many conditions (such as cystic fibrosis), they were never able to work out definitively what was wrong with him. He remained in NICU and special care for 4 weeks until he was well enough to come home. Mary was soon discharged from the hospital that she gave birth in, and was travelling every day to spend time with her baby and learn how to care for him and manage his stoma. He was discharged home with the stoma bag until the surgeons judged he was strong enough to undergo the stoma reversal operation. He had this operation when he was three months old, which was successful. At the time of the interview he was 6 months old, and making a good recovery. 

* Placental abruption
A serious condition where the placenta starts to come away from the inside of the womb wall.

*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.
 

Mary was recovering from a placental abruption, so could not be with her son long before he had his operation.

Mary was recovering from a placental abruption, so could not be with her son long before he had his operation.

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Really it was kind of unclear and I didn’t really know how ill he was either I think I was quite ill as well, I realise I was on a lot of pain relief as well so I didn’t really know what was going on. So and obviously, you know, when they’re that little and at that stage everything, things change kind of, changed quite quickly. So what, what had happened so he was born on the Sunday, transferred on the Sunday night, Monday, you know, he was just continuing to be watched in the neo-natal intensive care and they were, you know, my husband was, was taking my, my colostrum over to the unit and they were trying to give him my colostrum and he was just continuing to vomit and not really, not really going forward or backwards just kind of, you know, yes just kind of on a plateau really. So they contacted [teaching hospital name] because [teaching hospital name]’s neo-natal surgery centre for London and they thought it might have been a surgical problem because, you know, the stomach was getting just kind of more swollen and he was vomiting and clearly I guess retrospectively the concern was that you know, you’re worst case and you don’t want to get into a situation where there bowels going to perforate so if there was a problem with the bowel they needed to identify it. So they sent x-rays down to [teaching hospital name] and [teaching hospital name] said bring him down here. So he got transferred in the baby ambulance on the Tuesday with my husband and then so Tuesday afternoon he got transferred down and he was reviewed almost immediately by, by the surgeons down there by obviously I wasn’t there but I heard about it afterwards by Prof [surgeon name]. And he kind of examined him on the Tuesday night and then examined him again on the Wednesday morning and what he said was, to me was on the Wednesday morning the stomach had become more swollen and also more tender kind of as they touched, touched it [son] was becoming more sensitive. So they just decided it was almost exploratory that they’d have to go in and operate on him to just see what was, if there was a physical blockage or, or you know, what it was. So they decided they were going to operate on him then on the Wednesday and fortunately I got discharged from [hospital name] so I was able to come down and see him before the went in for surgery. 
 

Mary didn’t realise how ill her son was. They were concerned about his swollen, tender tummy and so performed an operation.

Mary didn’t realise how ill her son was. They were concerned about his swollen, tender tummy and so performed an operation.

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Really it was kind of unclear and I didn’t really know how ill he was either I think I was quite ill as well, I realise I was on a lot of pain relief as well so I didn’t really know what was going on. So and obviously, you know, when they’re that little and at that stage everything, things change kind of, changed quite quickly. So what had happened, so he was born on the Sunday, transferred on the Sunday night, Monday, you know, he was just continuing to be watched in the neo-natal intensive care and they were, you know, my husband was taking my colostrum over to the unit and they were trying to give him my colostrum and he was just continuing to vomit and not really, not really going forward or backwards just kind of, you know, yes just kind of on a plateau really. So they contacted [teaching hospital name] because [teaching hospital name]’s neo-natal surgery centre for North London and they thought it might have been a surgical problem because, you know, the stomach was getting just kind of more swollen and he was vomiting and clearly I guess retrospectively the concern was that you know, you’re worst case and you don’t want to get into a situation where there bowels going to perforate so if there was a problem with the bowel they needed to identify it. So they sent x-rays down to [teaching hospital name] and [teaching hospital name] said bring him down here. So he got transferred in the baby ambulance on the Tuesday with my husband and then so Tuesday afternoon he got transferred down and he was reviewed almost immediately by, by the surgeons down there by obviously I wasn’t there but I heard about it afterwards by Prof [surgeon name]. And he kind of examined him on the Tuesday night and then examined him again on the Wednesday morning and what he said was, to me was on the Wednesday morning the stomach had become more swollen and also more tender kind of as they touched, touched it [son] was becoming more sensitive. So they just decided it was almost exploratory that they’d have to go in and operate on him to just see what was, if there was a physical blockage or you know, what it was. So they decided they were going to operate on him then on the Wednesday and fortunately I got discharged from [hospital name] so I was able to come down and see him before the went in for surgery. So he went in for surgery on the Wednesday afternoon and my husband did all the consents and things like that, I hadn’t really even had the conversations with the surgeon or the neotologist because I wasn’t around which I guess is one of those strange things about when it happens so immediately after the birth.

No we were told that there was no physical blockage we were told that there was a bit of the bowel that looks dodgy that had been removed. And we were told that the, you know, they’d taken biopsies and we were told it could be things like Hirschsprung* so that was a possibility, a possibility at that point in time. And also, and they also did say that they were doing more detailed than normal tests for things like cystic fibrosis as well so, you know, we weren’t able to, we weren’t, nothing was ruled out and we were kind of a couple of things were kind of introduced as potentially what the issue was.

* 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.
 

Mary said she doesn’t think they will ever really know what was wrong, but tests for several serious conditions came back negative, so there was room for celebration.

Mary said she doesn’t think they will ever really know what was wrong, but tests for several serious conditions came back negative, so there was room for celebration.

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[They really didn't know which is fair enough they genuinely didn’t know what it was.] There were a lot of adhesions on the bowels so they believed that he might have had some infection initially after birth which caused the damage to the bowel so that’s their thinking so. I think they, I think that was, that was something I said discussed a lot with the stoma nurse at the time, is I don’t think we’ll ever know what went wrong and I think sometimes, with, and maybe, maybe that's more prevalent with neo-natal, is things are working and just be glad they’re working and we ruled out all, and I think that was something that I think only retrospectively I realised that when the biopsies came back and everything was negative I was like yes so, so what, exactly you still, this still doesn’t give me an answer, what I didn’t realise was that was a cause to celebrate because that would have been a kind of much darker outcome.

Yes.

But actually the fact that they were all negative so yes maybe something of it in the future one would be able to diagnose but the fact that we’re ruling out so many really difficult illnesses to deal with was really good news and if we don’t know exactly what was wrong then that’s okay. 
 

Mary was supported in her discharge so she could be with her son who had been transferred to another hospital.

Mary was supported in her discharge so she could be with her son who had been transferred to another hospital.

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That wasn’t even something I’d thought of so when he, I had a C Section on the Sunday and I think normally after a C Section you’ll normally be in hospital for three poor four days, also I was quite ill after the C Section so I was quite ill on the Monday and Tuesday and was kind of getting there on the Wednesday morning and my obstetrician kindly said look with [son] having been transferred to [teaching hospital] on the Tuesday evening, she said, ‘Show them you can kind of get up have a shower and provided you get taxi’s to and from the hospital every day and, you know, you’re not lifting or doing anything too taxing,’ she said ‘I’m willing to discharge you because I know you need to be with your baby,’ Which was a good thing for her, you know, very, you know sensible and kind thing for her to do. But I obviously needed to have the postnatal checks and they were quite important as my blood pressure was proving quite problematic. So she said I think it was the obstetricians initiative but the midwives I think organised it that I she said, ‘You’re not going to be able to be at home for the midwives to come and do the normal postnatal checks at home’ so they arranged with the [teaching hospital] that I could go into their maternity unit and have the postnatal check done with their midwives. 
 

Mary was daunted at first but soon became an expert at looking after her son’s stoma.

Mary was daunted at first but soon became an expert at looking after her son’s stoma.

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So the nurses in, I guess I’m somebody that likes to be involved in things and kind of do things as soon as possible so the nurses in the neo-natal intensive care would kind of, would happily let me help or do pieces of the change. Because obviously, you know, especially when your baby’s in a little incubator anything you can do that involves touching them or bonding with them you want, you want to do. and so you have, you probably have the pad for the first week to ten days just while everything’s settled and also while they were kind of monitoring the output and obviously it’s not just about changing the nappy because they would often collect the output and weigh the output and things like that so there was kind of additional things you would, you would be doing as part of the, the nappy changing that were necessary for them to monitor him. So I think for me as well, I mean you’re kind of getting used to dealing with the fragile little baby who, you know, is so little and then you kind of have this, you know, you’re afraid of kind of tearing the wound of hurting something and then the stoma* would bleed and you kind of have to get used to the fact that it’s bleeding. But you just kind of, I felt like unless I kind of force myself to do it I’m never, I’m never going to, you know, kind of have to learn how to do it. I think it was made clear to me quite early as well that the process of getting him out I guess you always think how do I get him home how do I get him out. And I realised that I had to get comfortable with him in order to get him home and to be able to look after him at home I have to get used to this. And it was really funny because [nurse’s name] the stoma nurse always used to go ‘Oh you’ll be so good at this, you’ll be telling me how to do it in a few weeks’ time, oh you’ll be so good at cutting out’, because obviously, you know, you get onto the stage of cutting out. ‘You’ll be telling me how it, how it best fixes’, so and that did become true, you become a little expert in, because obviously you learn this because of his geometry and exactly where its fitted, a certain stoma bag wouldn’t stick very well because, you know it would be too near the kind of the curve of his stomach so, you know, it’s amazing how you do become a little expert in these things.

* 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.
 

Mary felt that there was too much pressure put on her to breastfeed her son when he was unlikely to be able to tolerate her milk.

Mary felt that there was too much pressure put on her to breastfeed her son when he was unlikely to be able to tolerate her milk.

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So I was initially breastfeeding him and the output was very high and he was actually he was, you know, taking to it fine he seemed to be coping alright actually. But the output was very high and he was losing weight and so when he was, I think when he was about two weeks old, he was below his birth weight which I know is quite common maybe but not at two weeks. so the, it had been indicated to me that children with stoma’s can have a problem with absorbing breastmilk or normal milk because of the fact that you know, the stoma being kind of high and not passing through the large bowel. I hadn’t realised quite how common that is actually, I think about 80% of children can’t tolerate milk. I don’t know study, it was kind of, I only found that out afterwards. So I found out on the day he was about two weeks old on the Sunday that he wasn’t putting, he was losing weight and there was a suggestion that we try him on Pepti-Junior you know, which is a broken down milk which children with stoma’s* are maybe better able to absorb. And they said they would do some tests on his, on this reducing substances on, reducing substances tests on his, on his poo to see if that was actually the problem. Which I wasn’t, I was told the test would take about three days to come back but in the meantime I should continue breastfeeding him, if I had the breastmilk. I wasn’t happy about that because I felt that, if your child isn’t putting on weight you just try something else you don't, I felt you don’t wait three days for the test to come back. And so I, I my breast milk dried up then [laughter] and we put him on Pepti-Junior and he did start quickly putting on weight. And the reducing substances came back to confirm that the decision taken was correct I was, that was the one situation that I was very, I would say I was quite annoyed about. And I can understand probably that taking him off breastmilk was probably a sub optimal thing to do because obviously we need to encourage breastfeeding and breastfeeding is probably the only optimal option. But when a child is losing weight and we knew that there was probably a relatively low chance they weren’t going to be able to tolerate breastmilk anyway and given he’d had such a difficult start in life not gaining weight was an extra-large problem. I was quite it made me quite skeptical of someone promoting the breastfeeding, I think I felt that strongly about it.

* 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.
 

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

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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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.
 

Mary is still in touch with mothers she met in hospital. The bond she shares with them is quite profound.

Mary is still in touch with mothers she met in hospital. The bond she shares with them is quite profound.

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Oh God everybody the nurses obviously the consultants and they have a rotation system so you see a different consultants every week which is not, it had its good points and it had it's bad points, so you got to know, you do get to know all the consultants. The chaplain, the chaplain was, all the chaplains were great actually it was lovely to have them come and visit in the afternoon. and I think, the chaplain there was particularly nice, actually, and the psychologists attached to the unit I used to enjoy talking to him about how children are affected by stays in intensive care and what the research is on things like that as well. and the other mums as well obviously there was a kind of parents room where you’d meet other parents but also the breast the breast pumping room as well, you would chat with the other mums. And there’s some I’m still in touch with, you know, sadly one of them, two of them their children are still in hospital so we keep in contact. And I think there is something about those parents, obviously, you know, you’ve gone to have a baby, you know, I’d done the NCT and I have my NCT mums who have been great and a real support but there’s, you know, it’s what you share with other mums who’ve had babies in intensive care is, it’s quite it’s kind of quite profound and I think we will probably keep in touch with some of those mums and babies for a long time.
 

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

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

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

Yes, and did they live in London or?

No Dublin, they came and stayed, yes.

That must have been quite a big upheaval for them.

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

Mary felt she was being trained to take her son home. She was grateful of the expert input, but also desperate to be able to be home.

Mary felt she was being trained to take her son home. She was grateful of the expert input, but also desperate to be able to be home.

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I think there’s quite a refined protocol for preparing parents to come home so we done, we did some rooming in the nurses were very good as to helping me and giving me tips so by this time, stage [son] was on formula so you, obviously there’s one thing you know how to make up but there was also kind of them telling me, telling me how to manage that day to day like getting the bottles ready, making it most efficient and so, and I probably knew, I probably took advantage of them as well, you know, when you’re discharged from hospital you just kind of, there’s two sides to that relationship. So you have all these very expert neo-natal nurses all who have slightly different styles of doing things as well and slightly different ways of swaddling the baby and holding the bottle and everything. So on one hand, you know, as a mum you kind of feel a little bit kind of intimidated and frustrated that you’re being told to do one thing one way and then another way and then just, just why am I being corrected and I wouldn’t have this if I was at home and all that. But then you kind of look on the other side and say wow I’ve just got all these experts who I can just plug for information and tips and everything so I think probably in the last two weeks especially when we were in the last room, the special care room you’re very much being trained for going home with your baby. So we, I think we were very much onto knowing exactly what we were going to do, I knew [son]’s routine I knew that it was best if we brought him home in a taxi at 5 ‘0’ clock in the evening because then I can give him a bottle and then he tended to go down around 8.00 and everything I think had been planned in my own mind. And we’d had time to get everything ready at home, get the bed ready get everything made up and almost like having his pyjamas ready before he left the hospital. 

So he needed to be putting on weight and I guess also ready to be able to manage him with his, with the stoma at home as well. And that’s quite an interesting one because putting on weight is quite easy to define it’s, you know, daily weighing and him tolerating the milk and him, kind of him, you know, quite obviously putting on weight. I think parents think ready to manage the stoma at home is a slightly different thing because that’s not something they can probably tell you either with a test but I kind of understood that that, well he couldn’t come home really unless we could manage him at home. So and there isn’t any definition of when you’re ready or when you can manage something because it’s not just being able to physically do something it’s also having the confidence in yourself to be able to do it as well and to be happy doing it. And also they’re keen that both parents can do it as well which is harder say for my husband to get as much practice in doing it because he’s only able to nip into the hospital, you know, after the first couple of weeks he was only able to nip into the hospital after work.

Yes.

But, you know, it’s really important that both parents can manage, can empty a stoma bag can deal with the situation when a stoma bag falls off. I think probably, you know, just observation and also looking at my enthusiasm for managing it and dealing with the task. I would say I think it’s fair to say though it’s probably not a test because probably a test is on myself as well of these kind of almost saying to them yes I can do it now I’m happy doing it rather than them, you know, scoring me in the background. I’m sure there’s a degree of that and that’s necessary for the safe guarding of the child but I think, I think a lot of it is also me getting to a point where I was saying to them yes look I am happy about doing this why can’t you know, I should be able to do this at home.

And do they prepare you by having you in and stay for a few nights, is that right?

That’s right yes so we did the rooming in I found, I actually found the rooming in quite hard because I found just living in the hospital 24 hours very claustrophobic. Because I’m someone who likes, just needs to get out, get fresh air so I found that quite artificial. But I can understand why it works for some people, to be honest for me I found the whole experience quite, quite frustrating to be honest so I didn’t really feel I benefitted that much from it.
 

Mary realised she didn’t really have a choice about whether her son had an operation. She found the lack of control over her son’s care hard.

Mary realised she didn’t really have a choice about whether her son had an operation. She found the lack of control over her son’s care hard.

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I have to say as well I think, I think because I had been ill, I didn’t ask many questions that first week and I kind of didn’t really have a clue as to what was going on in all honesty it was only retrospectively that I could piece together the things and that’s kind of just how, how it is. but I did find as well quite striking and I think, I don’t think it bothered me as much because I think I was just so kind of just, you know, my head was just in a slightly different place but then you don’t really have a choice with, as an adult if somebody says I need to do an operation on you, you kind of have a choice so you kind of have a, even though it’s, you know, there isn’t really a choice but you do, you do have a choice. I realised with neo-natal you don’t really have a choice you’re just being told, like I and I find that, I find that quite strange as a kind of a very like I would think responsible and very loving mother that I’d no choice really in how my child is being treated. And I think probably as well although everything was, you know, properly consented and everything not everything is consented really because it doesn’t have to be consented and it would be silly to consent it either because some things just have to happen at certain times and they will get done at certain times. But I find that quite that lack of control quite, quite hard in some ways. But it’s necessary, it’s necessary but I did find that, I did in some way I had no choice that somebody put a stoma into my son. But obviously it was the right thing to do and I shouldn’t have been able to stop it or anything and I wouldn’t have wanted to stop it as it was the right thing to do but at the same time I had no choice that that happens anyway. 
 

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.

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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.
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