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Parents’ experiences of neonatal surgery

Feeding the baby before and after neonatal surgery

Babies who need neonatal surgery often have complex feeding needs, both before and after surgery. Although some may be able to breastfeed or take a bottle, they may also be fed breastmilk or formula by a tube through the nose, directly into their stomach (NG tube)*, or by total parenteral nutrition (TPN)*. In some conditions, babies may not be able to absorb breastmilk.

Breastfeeding a baby that was either born prematurely or with complex health needs was not straightforward for most of the mothers we spoke to, especially if they themselves were unwell or recovering from surgery. In the end, some mothers managed to establish breastfeeding, but many were not able to or decided it was best for them and the baby not to keep trying. 

Shanise tried to breastfeed her son, but he couldn’t latch on. She felt guilty, but said “sometimes you just can’t do it”

Breastfeeding

Claire said, breastfeeding is a “big deal, because you feel like you can’t do anything for your baby” and many mothers expressed similar feelings. When their baby was critically ill, and being cared for by expert staff in neonatal intensive care (NICU)*, it was the one thing they felt they could do as a mother to try and help their baby. “I couldn’t do anything else for my baby” Barbara.
 

Amy said it was the one thing she was able to control during those frightening weeks when her daughter was in hospital.

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Age at interview: 39
Age at diagnosis: 33
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So our child was in there for many months. There was very few things that I felt like I had control over, while I was there, and one of the things that I could control was expressing milk. So something very, very simple but it was the one control I had. So she, I started pumping from day one. I think it was one of the things that I wish the hospital had helped me a bit more with. I was left with this pump and the curtains were drawn and they said, “Just do it.” I had, honestly, I’ve actually never seen anything like it since. It must have been from a few decades ago. It was an older unit I’m sure and I was just left with it. I had no idea. I have absolutely no idea. First time parent “here you go, express.” So probably could have used a little more assistance and, actually, that’s something I could have used assistance with later on. So expressed for two and a half months and after two and a half months, she started breastfeeding. We were so blessed. I mean after two and a half months, for her to latch on and take, I mean I was so lucky. And one of the, the specialists in that said, the nurse that was specialising in it said, “oh, we’re, basically, it’s to the effect, you’re an older mum. You’ll know how to do it.” This is my first baby, you know. She’s two and a half months old. She’s never done it. I’ve never done it, you know. We, I want help, you know, and there’s people here. So, even when the help is there, sometimes they make assumptions and I think that’s something that, don’t make assumptions. No matter how old I am or what my background is, don’t make assumptions.
Victoria said it was the worst and the best thing – a “chore” to express, but the best thing she could do for her premature son.

Angie and Luke’s son was diagnosed with Hirschsprung’s disease*. There was a risk of him developing a condition called necrotising enterocolitis (NEC)*, and they had been told that breastfeeding was better protection against it than formula milk. So for them, “breastfeeding was really a life and death thing”. They eventually found a lactation specialist to help them, because they did not feel the hospital staff were able to give enough specialist advice.

Expressing

If their baby was premature and/or being cared for in NICU, mothers who wanted to breastfeed started off by expressing milk in the hope that this could be given to their baby, and that they might be able to breastfeed when they were stronger and fitter. Many mothers we spoke to persevered for weeks to develop their milk supply. It was exhausting, time consuming and often miserable, being in small rooms with breast pumps on their own for hours. Hayley’s son was very ill with exomphalos*. She kept expressing for 3 months, but said, “it’s kind of soul destroying you’re really alone in it, especially in the middle of the night, not even your baby’s there, it’s really, really difficult.”
 

Nicky took weeks to build up her milk supply for her premature son. She fashioned a DIY bra to make it easier, so she didn’t have to spend so long away from her son.

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Age at interview: 39
Age at diagnosis: 39
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That’s a very good question, I guess probably would, the individual parts to think about, one of the things on my mind is around the expressing because one of the nurses said you did so well to keep going because my impression is that babies that are born that early the mums don’t usually manage to bring them home breastfeeding and I can completely understand why [laughter]. But yes one thing I thought there was don’t give up because it took me weeks and weeks for my supply to build up and I counted it down to the last mil so that I could see that actually it was creeping up little by little so that actually it felt very disheartening that it wasn’t getting anywhere and was it worth it. And so I did think there was a couple of times actually I really like to encourage mums who might be in that situation and with just practicalities around that because if you're having to do it eight times a day you’re getting your breast out eight times a day to do it and when I so we, within about the first three days fashioned a bra that we could just stick, you could just stick the funnel, shield things in so I didn’t have to get undressed. It sounds daft but when you’re with there at the hospital and nearly three or four times you’re going away to express because although you can do it by the bedside there was not often that much room or if somebody needs to do something you’re in the way so it’s not very practical to do. I didn’t mind doing it but to just wasn’t practical so you’d be going off and sitting in a windowless cupboard for half an hour and then with all the paraphernalia of washing up and bottling up and rinsing and sterilising whatever that went before and after, you could be gone for 40/45 minutes. And in [city] oh the doors, you know, you could spend 5 minutes trying to get onto the unit or round to the expressing room and then get out of the expressing room area back onto the unit and oh the frustration. You’d lose a lot of time with the baby, so anything that you could do to make it quicker like have your adapted bra.

Yes, homemade bras…..

Yes because I, you know, just holding, within 24 hours of just holding the equipment there it was really uncomfortable and wrist was aching and I can’t do this eight times a day for, you know, it could be how many months until, you know, he reaches term I thought this is completely unrealistic so I have to make it work for us, so a few little bits like that that helped make it do-able. And then just to also to encourage mums to persevere.
 

Victoria described how expressing became her life. But it was hard to develop her breastmilk supply when she could not be near her son.

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Age at interview: 31
Age at diagnosis: 31
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So we were able to dress him I was able to start breast feeding Bobby which was brilliant it was amazing you know, it was breast feeding, cos I’d been expressing and if you ever speak to any NICU mum they always say the chore of expressing is like literally horrific it’s awful. it’s the worst- it’s the best thing because it’s the only thing you can do for your child but it is a chore by the end of it because you’re expressing every two to three hours, you know, you haven’t got your baby with you which helps you produce your milk so you’re like looking at photographs you’re trying to, you’re trying to, it’s just, it’s just awful really. But you’re doing it for the greater good and to actually then get your baby to latch on is an amazing feeling cos you feel like you’ve done it all for a really good purpose. yeah we were basically getting ready to going home from nursery, the only reason he was there really was cos he had a broviac line in, he had a couple of blood transfusions then we got ready to go back to [Smaller hospital] and we got transferred back into the nursery, which-

And the breastfeeding did that just tell me about how important that was.

Massively like it was, I never realised that you can breast, I never realised that you can get milk out really so when they said ‘Do you want to breastfeed’ I was like ‘Yeah’ cos I just presumed that my milk would come in, I don’t know what I thought actually, I didn’t realise that it would come then. So I was like ‘Yeah I wanna breastfeed but how am I gonna breastfeed will it kick in,’ I don’t know for some strange reason I thought that my body would kick in on August and I’d just get all this milk, I didn’t, I don’t know why it must have just been from a baby moment I was having I suppose. But when, so when I started to get help to bring my milk out that was majorly important expressing became my life [laughs] really every three hours and once overnight and I did that solidly for like four months. The odd night I let myself sleep through cos you’re just exhausted but yeah pretty much did that but obviously with stress when you’re tired and if your diets not great, if you haven’t drunk enough it does affect your flow, it did me. And I tried to get my flow back up but it was just, it was just hard, cos I’d been expressing for five months, you know, by now you should be weaning your baby technically and plus it’s not just expressing, it’s not just like a mum that’s had a newborn and she’s expressing because she can’t breastfeed at that point, I haven’t got Bobby’s smell I haven’t got Bobby there suckling and doing all the things that baby’s do to help you produce. And so I’m having to sit down here where I’m now, at 2 ‘o’ clock in the morning with two pumps, freezing cold, [Partner] will have made me a cup of tea trying to, with a picture of Bobby up there, but you can’t do that anyway cos you know that he’s poorly so you’re upset and you’re like trying, it’s just, it’s, it’s just a whole different chore but you wanna do it cos you want him to have the best but I thought I would have had so much milk it would have done him until about two but we’ve gone through literally like five months with the expressed pumped milk, I had a freezer full my mum had a freezer full, we’ve gone through it in like six weeks, it’s just gone. And literally we’ve had to like slowly wean Bobby onto formula but yeah. I mean it’s like, I breastfed for a good two weeks, not solidly because obviously I wouldn’t be there overnight and they had a bottle to feed Bobby overnight but I just couldn’t, I couldn’t get my flow up enough to be able to breastfeed him, I’d love to but I would have loved to have breastfed Bobby right up until he was weaned but unfortunately I couldn’t so.
 

Joanne’s daughter became ill very suddenly and was rushed into hospital. She was desperate to maintain her milk supply and remembers expressing at her daughter’s cot side with doctors all around.

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Age at interview: 41
Age at diagnosis: 34
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But we talked to the doctor and I remember her particularly a female intensive care doctor who worked all over the hospital and was actually on the bleep as well for the, you know, for re-suss. She chatted to us, you know, I remember asking her quite specifically about what would happen, you know, when we turn the machines off how would it happen, what would happen. I remember I remember even laughing with her though, you know, we in the midst of it all we had, you know, this was going on over now five days a week or whatever, I remember almost with this particular doctor having a bit of a giggle at all the parents, you know, how different we all were in intensive care, how bizarre we all behaved if you see what I mean like, because I was sitting there constantly with this blinking electric breast pump stuck to my nipple, you know, like it come sort of through my T-shirt and stuff, so like all of the male doctors found this all, you know, you could tell really uncomfortable, you know they were coming over trying to have a serious conversation with me and I’d be like yes carry on and you could bits of the nipple being squeezed out and stuff and I was merrily filling up every freezer in the hospital with milk because I was just still pumping and I wasn’t ready to, you know, stop at this stage I had no idea what was going to happen. 
Rebekah became skilled at expressing milk wherever and whenever she was, so that her daughter had a good supply. “It’s a big joke with all my friends…I will express anywhere so I will have a little back pack and I just have an electric expressing pump.”

Support for breastfeeding

Some mothers we spoke to felt they had been well supported in expressing and breastfeeding. Vanessa took her son back into hospital for his operation for Hirschsprung’s disease when he was 10 weeks old. She had been breastfeeding at home and really appreciated the support she was given back in hospital. Nurses opened up an empty ward for her and another couple of mums to use to breastfeed and stay in.
 
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Vanessa really appreciated the support she was given to continue breastfeeding her son when he went in for his operation.

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Age at interview: 31
Age at diagnosis: 30
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Yeah when he was having his operation I did cos I was keen to make sure I could continue to, to feed him because he had been such a good feeder and I breastfed my other little boy as well like I said and they had sort of when we was in the neo-natal, she did say ‘Are you breastfeeding’ and I said ‘Yeah I’m trying’ like and she said ‘Yeah that’s good it’s preferable if you can because it’s easier for them to digest with potential bowel problems.’ I mean I would have anyway but that sort of just reinforced it like yeah we want this to work and that was like one of the good things when I had to stay in with him because I went back on the neo-natal ward after like a couple of days they were a bit like, you know, how long are you staying sort of thing because obviously I didn’t have him with me usually the baby’s in the neo-natal ward the mum and dad don’t get to stay. 

Yeah, yeah.

But they were really good they there’s a ward that they weren’t using anymore that they’d closed and they re-opened it for me and two other mums and so that we could stay there because they, I don’t think they had room for us in there in the neo- in the post-natal ward. So they opened this up and we, we could stay there and the babies were still in the neo-natal ward. But it was just so that I could breastfeed him basically because they were wanting, we want him to be breastfed and with the other mums it was because their babies were premature and they were just getting to the stage where they could try and breastfeed them so again they were like we’ll do this. Yeah I did feedback to then that I thought that as really good that they did that.
Ally’s son had gastroschisis* and was in NICU and then a high dependency unit (HDU)*. Nurses supported her to express milk for him, which they fed through a pipet and then a bottle. 

“Yes expressed milk, I did try to breastfeed him and again staff were lovely in trying to make that happen but he just didn’t get it, he couldn’t latch on so we’d just feed him from a bottle, again throughout the day I would do all his feeds.” Ally

Not enough support

But some mothers didn’t feel as though they received enough support in their efforts to breastfeed their babies. Some NICUs and paediatric surgery wards did not seem to parents to be well enough equipped or to see it as a priority. Angie and Luke were very disappointed that when they took their son back into hospital for his operation for Hirschsprung’s disease, the promised breast pump for Angie to use was not available. Barbara was upset that when she was still expressing a midwife tried to order her a hospital meal for breastfeeding mums, but the breastfeeding support nurse assumed she didn’t need it as her daughter was in an incubator, she said, ‘but she’s not breastfeeding, is she?’ (See ‘Neonatal surgery- parents’ experiences of communication with health professionals’).
 

Claire would have liked more information and advice during her pregnancy about how breastfeeding or expressing was going to work once her son was born.

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Age at interview: 34
Age at diagnosis: 33
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Yeah. And we’d been given the opportunity to have a look round the neonatal intensive care unit at the women’s hospital. So we did feel very supported from a medical what will happen next point of view. But one thing I felt wasn’t well addressed was breastfeeding, actually. Which was really important to me, having fed my eldest son. And so I independently contacted the feeding adviser for the women’s hospital. But again, I think that’s very much the focus becomes on, on the baby and the very medicalised side of things. So normal conversations like breastfeeding don’t tend to, don’t tend to happen.

Did you get anywhere with breastfeeding in terms of the information ahead of time or? 

Yes, I did get a little bit of information about expressing and being able to give that to, to [son] early on. But it was quite minimal and I felt like it was me searching it out rather than it was offered.

And there wasn’t really any advice on how to keep going, you know. And also, and this was a big issue for me, I discovered that they pasteurised the milk that they, you can donate to the milk bank in the children’s hospital but they sterilise the milk and pasteurise it. Which obviously takes away a lot of the goodness from the milk and that’s not the same policy as at the children, The women’s hospital and I didn’t feel I’d been informed about that. So, when we discovered that, it was only after about a fortnight or something and most of the time, he had, he was either on TPN*, so he wasn’t taking it. So it didn’t have a big impact but I, they wouldn’t store the milk unpasteurised for us.

In the milk bank there so that meant I had to express, bring the milk home, take it in every day. I couldn’t use the milk bank facilities at the children’s hospital. Which for, you know, poorly baby, you want to do the best by them and again, that was a really specific example of him not actually getting the same level of care or environment that he would have got in the neonatal unit.

*(Total) Parenteral Nutrition (TPN)
TPN is nutrition is delivered directly to the blood via a vein.
 

Barbara felt it was a real battle to establish breastfeeding for her daughter who was in hospital with gastroschisis. She did in the end though, and breastfed her for 15 months.

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Age at interview: 44
Age at diagnosis: 38
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The other thing that was wasn’t great was the support for me wanting to breastfeed so, you know, given all that’s going on I was, you know, this is what I’ve gotta do and it was actually my midwife, my community midwife who sorted me out with a pump and all of this and so, and because I had a clue, I’m a health professional and I’d breastfed a child before I knew what needed to happen but if I hadn’t had that or been determined or asked questions, no-one said a word about it no-one was interested because as far as the medics were concerned, this baby wasn’t getting fed for three weeks anyway, you know, and I just don’t, there was just no expectation but for me it was really important because this was one thing I could do. So yeah.

So I did that but they had a breastfeeding support nurse in the hospital and they had a little room that you could go to this kind of miserable place that, you know, so they had equipment there as well that I could borrow when I was there during the day. So I would go away to this little room with a pump and in some ways that was nice as well cos it was a break away from staring at sick babies you know, so I’d go away and do that. And you get into a little rhythm of where to put bits and bobs and how to sterilise them and whatever.

But you didn’t really get support for that at the beginning?

No, absolutely not, but and even the breastfeeding support nurse the one thing that I remember from her was that one of the nurses had said ‘Oh you know, a mum has been here all day would it be alright if I give her-,’ because there was a ward round and I had missed, there’s only a tight window for going to get food in the canteen and I’d missed that so she said ‘Can I just give mum something to eat off the trolley I believe we can do that for breastfeeding mums?’ and the breastfeeding support nurse said, ‘But she’s not breastfeeding is she?’ because my baby wasn’t able to eat and I wanted to punch that woman, it was the most insensitive thing to say to a mum who’s sitting setting her alarm every three hours to do this, you know, she wouldn’t even give me a free meal. so yeah, but, you know, I was determined so I did it and like I say it was the thing I felt I could do, so I was obsessed about it.

And was that important?

Yes.

And you couldn’t do anything else.

No I couldn’t do anything else for my baby I couldn’t even pick her up at this point, I couldn’t feed her, I couldn’t comfort her when she was crying, I couldn’t do anything. So yeah it was something I could do and actually it worked, you know she, I breastfed her for 15 months so screw them all [laughs].
Feeling the pressure to breastfeed and support to stop breastfeeding

Some mothers felt that there was too much pressure put on them to breastfeed or express for their baby. Shanisse tried breastfeeding her son, who had gastroschisis, for over a week, but it never really worked. She felt that there was too much pressure put on her and she was made to feel guilty. Mary’s son had a bowel operation and a stoma* made in the first week of his life. Some babies with a stoma are not able to tolerate breast milk and Mary felt that the pressure she was put under to express milk for her son was inappropriate.
 

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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Age at interview: 42
Age at diagnosis: 41
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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.
 

Sonya felt she was put under a lot of pressure to breastfeed her daughter as soon as she came out of theatre.

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Sonya: And the sister who took me was, I don’t know I can’t think of the words to describe her but she was militant maybe was the right word. Like Livvy had literally just come round and I picked her up and was holding her and she was like ‘Right you need to feed her, you need to try and feed her now,’ ‘Okay.’ ‘Is that normal, is that normal has she normally latched on by now, is she latched on right?’ And it was just like really in my face, quite aggressive, really over the top and the anaesthetist was going ‘Just, just give her a minute she’s literally just come round, just give her a minute.’ And I’m thinking oh my God is there something wrong and she obviously had a check list she needed to get through to see if she was okay after the anaesthetic but it was literally within like a minute of me seeing her.

Adam: And it was putting the pressure on you to diagnose in a way.

Sonya: Yes.

Adam: Like is this normal does she appear normal when you only know what’s normal when the baby’s a three week old baby’s just come out of a general anaesthetic like how are you supposed to know what.

Sonya: And I - you know she is still sleepy so, and the anaesthetist is saying if she’s not feeding in ten minutes then we’ll worry now it’s fine because she’s still, I mean look at her she, I mean she was still like she’d just come round from a ten hour sleep, so I didn’t enjoy that bit it was that kind of initial rush of great relief and wow she’s fine to oh is she fine I’m having all these questions shoved at me with a, a clipboard [laughs]. 

You don’t normally have someone with a clipboard over you while you’re trying to feed your baby either do you so kind of yeah.

Adam: And ten people in the room and whatever and all that business as well so. 

Sonya: And also she didn’t know, I mean obviously I was only three weeks into breastfeeding could have still been really difficult – she hadn’t asked before, all this you know, if things were going well or whatever, so wasn’t great but it turned out she was fine and within a couple of minutes she had latched on and was feeding away.

Adam: Feeding like crazy. 
Julie was pleased that staff encouraged breastfeeding but were also very supportive if people decided it wasn’t for them. Hayley wanted to give up expressing and move completely to formula and was grateful for the support of a particular midwife. “I just would like ask, saying to the doctors, “Please just let me off the hook, and they’re like, “It’s not for us to decide that”. And then I think it was [midwife] who was like, “just let it go, you spend more time with him”, you know.”

In the end, some babies are too unwell or unable to breastfeed

Despite their best efforts, in some cases babies were too unwell to breastfeed, or unable to tolerate breastmilk and needed a special formula milk that they could digest more easily. Nicky struggled for weeks to build up her milk supply but in the end her son was put on a specialist formula milk as he wasn’t able to digest breastmilk. She was devastated. Joe tried to breastfeed her daughter but her exomphalos and heart condition meant she was too weak to really manage. Both Ally and Zoe tried to breastfeed their babies (both with gastroschisis) but neither ever really latched on.

Breastfeeding breakthrough 

For some mothers we spoke to, there was a breakthrough. Amy was “ecstatic” when after 2 ½ months of expressing, her daughter was able to start breastfeeding. It was a really bonding moment for them, and in the end she breastfed her for a year. Lucy felt it was a real accomplishment to have establishing her milk supply having been separated from him while he was in NICU, and for her son with Hirschsprung’s disease to start breastfeeding. “I’d managed to bring my milk in and that was, my major accomplishment was getting my milk in, cos I’d spent so long without him and having to bring it in and I’d spent a lot of time, I was a full time milking machine really wasn’t I, just constantly trying to get it in.”

*Footnote definitions:

Nasogastric (NG) tube
A tube placed through the nose into the stomach. This may be used to drain the stomach contents after surgery or to provide milk when babies are not able to feed fully by mouth.

Total Parenteral Nutrition (TPN)
TPN is nutrition delivered directly to the blood via a vein.

Neonatal Intensive Care (NICU)
A unit for critically ill newborn babies and infants who need the highest level of nursing and medical care. Babies in NICU often require support for their breathing. Those undergoing major surgery will often be looked after in a NICU.

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

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.

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.

High Dependency Unit (HDU)
Babies in an HDU require slightly less monitoring and medical support than in an Intensive Care Unit (ICU). They may still need some help with breathing.

Stoma 
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.
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