Parents’ experiences of neonatal surgery

Transferring the care of mother and baby to a specialist hospital

The need for transfers to specialist hospitals will all depend on both the baby’s condition and the type of hospital care locally available. Babies who require surgery will often need to be transferred to a hospital that has a specialist neonatal and paediatric surgical team and facilities. While many hospitals have neonatal intensive care units (NICUs)*, not all have staff with the necessary skills to perform complex surgery on babies with rare conditions. 

Michelle and Harry live in London, and it turned out that the specialist neonatal surgical team was based at their local hospital, just a few minutes away.

Michelle and Harry were very lucky that their local hospital was where the specialist surgical team for their area was based.

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I really didn’t want to be transferred and we were very fortunate because the neo-natal surgical team there actually specialise in bowel surgery and so for us it was not only the hospital we were going to have the baby in anyway but it was actually the best place we could have been in the country. So they had another baby there who had been transferred three weeks earlier from [city in Wales] so she’d had the baby in [city in Wales] with gastroschisis* and had been transferred to [hospital name] a and was subsequently were living in the patient hotel, you know, for weeks and weeks and weeks whilst their baby had the specialist care that it needed before it could then go back to [city in Wales]. So we were incredibly fortunate, incredibly fortunate because it was our local hospital and so, you know, for us it was the best place we could possibly have been for him and we had an amazing team, absolutely amazing team.

* 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.
But most parents were not so well placed. In practice, parents often see their baby transferred to large specialist hospitals in their closest major city. This can be a long way from home and involve long journeys to visit their baby, or staying in a hotel or hospital accommodation for long periods. Donna and Matt’s baby was born in their local maternity hospital, but he became unwell shortly after birth. He was later diagnosed with Hirschsprung’s disease* and they were told he would need to be transferred. “His x-ray shows a blockage, it’s not something we can deal with here, so we’re transferring you…it was about half five in the morning when the ambulance turned up to take him away”

Transfer of care during pregnancy

Some parents were alerted during pregnancy that their baby would need to be transferred to another hospital to receive specialist care after birth. Claire and Hayley both had sons diagnosed antenatally with exomphalos* and were told the care for their baby would be at a specialist hospital in their respective local city. Zoe lives in Scotland. Her local maternity hospital is just 20 miles away, but once her daughter was diagnosed with gastroschisis*, she was sent for scans at the specialist hospital where her daughter would be cared for after she was born. It was a 3 hour drive away. 

Some mothers continued to have their antenatal care at the local hospital (e.g. Ally and her baby diagnosed with gastroschisis) while the planning for their baby’s care after birth was at the specialist hospital. This meant a lot of travel during pregnancy for scans in different places. Having their antenatal care split across different hospitals caused confusion and stress in some cases. Amy E found it very stressful having the responsibility for coordinating the communication between her local hospital and the specialist centre.

Hayley and Thomas had a two-hour journey to the specialist hospital for scans on her baby.

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Hayley: So from here it was about well two hours because you have to include parking and at those times of the day so it was two hours. also we, so I had my midwife appointments at the doctors but she concentrated on me that’s how they described it, [specialist hospital]’s concentrated on the baby but then I had these odd appointments at our local hospital, where they just didn’t get it and they struggled to understand what was happening, sometimes they gave us more anxiety than.

Thomas: Yeah.

Hayley: Put our mind at rest.

Why were you going to the local hospital?

Hayley: They felt that it was right to keep both hospitals in the loop of what was happening in case there was an emergency and I ended up at our local hospital. But hindsight it wasn’t the best situation.

Thomas: No.

Hayley: Sometimes caused a lot more, you know, stress than needed.


Hayley: Well the first time I had an appointment with the doctor and she said something about his the circumference of his stomach that it was too small and I said no it’s not too small there isn’t one because he didn’t, they don’t measure that and she said, ‘Oh, oh yes, yes, yes he doesn’t have one,’ and I thought what? And then she said she couldn’t find his heartbeat and it was all a bit stressful. So then I went to my midwife and I asked if I could see somebody else in [county] and they, she said yeah and she put us to a more senior member of staff but then towards the end of the pregnancy [specialist hospital]’s thought it would be better to have the scan here and then a scan there so I was going every week or I think two weeks I think it was.
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Amy E had a plan in place with her local hospital in case she did not have time to get to the specialist hospital to give birth.

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Age at interview: 32
Age at diagnosis: 29
Yeah that’s the specialist, yeah surgical unit for the South East cos it is, even around [county] it’s, the closest surgical unit, cos everywhere else level 3 units I think but they’re not surgical ones, so. Cos that’s the other thing when I was pregnant I had to go to [main local] all the time and this is good as well [main local] Hospital which it’s still 50 minutes away but it’s closer than [specialist surgical centre] it’s my local hospital with a high level neo-natal unit, they don’t do surgery but they, but they I saw a consultant there from the neo-natal unit when I was pregnant and they basically put a plan in place in case I didn’t make it to [specialist surgical centre] in case I went into labour early. Cos I was panicking what if I don’t make it to [specialist surgical centre] where do I go? Cos what hospital, if I go to [local] they’ve got nothing there and what would you do. So they, that’s ordered in, ordered the kit like the silo and everything so if I had her there they could stabilise her and get her into an ambulance and get her to [specialist surgical centre] for me, so at least I knew then I thought at least I know if I can’t get anywhere else I’ll get to, get to [specialist surgical centre], I’ll get to [main local] and [main local] can, she won’t die because that’s what I was thinking, if I’m somewhere where they can’t, they can’t deal with it what do I do wrap her in cling film myself and drive her up to [specialist surgical centre], you know.
Transferring the baby after birth

The babies in this study who could not be cared for locally often needed to be transferred quickly after birth. This was either because they had conditions that had been diagnosed antenatally (such as exomphalos or gastroschisis*) or because once born their conditions became apparent (such as Hirschsprung’s or Congenital Diaphragmatic Hernia*). Whether they had been prepared for their baby’s transfer or not, parents found this separation stressful and distressing.

Sally-Anne and Simon had been prepared that their son would need to be transferred, but it broke Sally-Anne’s heart to have to say goodbye to him so quickly. She counted every minute of the 27 ½ hours until she next saw him.

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And to me I’d spent less than five minutes with him, you know, and then that was it was like we have to go, we need to move him now. And then they ran [son] didn't they out of the hospital, you know, the paramedics as well and I followed in the bed, the midwife who I’d got she took me in my bed to the front door to go and wave goodbye to him and I waved goodbye to my son not even knowing if I was ever going to see him again but I sat there and I waved good bye with us not knowing [tears]. that broke my heart because I hadn't even held him I’d been given a photo and that was it, I’ve got a photo on my bed, [partner] obviously had to go with [son] because he needed at least one of his parents there, so I was in one hospital and [son] was in another. And then that was it, there was nothing, for 27 and a half hours, you know, and I counted every single second.

When you say nothing, no news or?

The only news was when I was badgering on to the midwives to phone them up to say ‘look I need to know. I need to know what's happening’. They’d actually given [son] twelve hours but they never turned round and told me, the midwives never told me that that they’d given [son] twelve hours. They said that if they can get him through these twelve hours then we would stand a bit of a fighting chance and I mean I wasn’t being told none of that. So even when I spoke to them I’m glad but then in another aspect I wish I would have known because, you know, when your child’s been told that he’s got twelve hours I mean, you know, I would have wanted to at least been informed, been told, but no.

And all this time all I’d done was hold his hand and that again, I mean we was never told that, you know, that I wouldn’t be allowed to hold him on the day or anything else. We was never told none of that and I don’t think that, I don’t think, I mean I can understand where they were coming from because it’s, you know, [son]’s care was utmost, you know and the care that they gave him was, it was out of this world it was, you know, second to none. But I also wish they could have just kept us in the picture, you know, of what they were doing, you know, what they normally do is, is how to deal with an exomphalos* baby or, you know, any baby in that case, you know, I think that was the hardest thing being kept out of the picture and not being told of how the procedures went because, you know, I didn’t know none of this I was, you just had to go, you know, just ride it type of thing and just go with it. But I think it would have been nice to have been able to prepare myself because I've got no, there was no preparations for that you know, there was no preparation at all and we knew, the only thing that we did know was that [son] was being transferred from one hospital to another.

* 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. 

Alix and Antonio’s son was diagnosed with Congenital Diaphragmatic Hernia (CDH) at birth. It was scary and overwhelming to hear the news of his condition and be told that he was going to be sent to another hospital.

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Antonio: Yes and when, the first reaction was probably this is not us, this couldn’t be us because everything was fine so what went wrong and so, so yes we just looked at each other and said well this, this is not happening. And the next thought was then what was going to happen or where is [son] why isn’t he with us having this discussion? Or is he still here with us at some point I was thinking probably he is not with us anymore. But then he [the doctor] said, “Your baby is stable” so he started to give now after the diagnosis the current status of the baby, “He’s stable, he needs surgery”, yes and that’s the first time when we heard the word surgery which was quite scary right because again you just think about this fragile small things and think, this is, this is difficult for an adult it will be worse for our, for our baby. So he said, “He needs surgery and he needs surgery as soon as possible. But we don’t have the technical skills or the resources to do - to take him to theatre here in [local town]. So we need to find the place, a cot for him somewhere else”. So again very confusing for us, parents for the first time, first time with the NHS as well. So we are, we are healthy people so we haven’t been in hospital before so it was quite disturbing to try to understand. So do we need to get into our car somewhere else or is the hospital going to help with these, is it going to be expensive is it going to be. So it was just disturbance in the whole system and a lot of information to assimilate. But then he [the doctor] said “I will come back to you in a couple of hours.” He was also very precise about the information in terms of timing and when it was going to happen next and “We’ll come back with you because I need to consult with other teams and where is the place for your baby”. 

There was four options. That was probably already like 7.00 p.m. And then it probably took him like another hour to confirm that [city] was going to be the place for [son] to go and then they started to help a lot with the organising they, we need to transfer Alix as well as a patient and don’t worry about [son] there is going to be a team of [city], from [city] coming to pick him up in a transporter, we will…So lots of information was shared at least to me and then I was trying to pass that to Alix who was still with all this gas and air and [laughter] looking at the elephants flying around her head. Yes so lots of information sharing so that we were able to see [son] so we took Alix on the bed still to go and see [son] and then and with the grandparents and [sister] as well. and so again very good empathy I suppose from the, from the team considering that even if it was after hours and not visiting time they let all the family to go and see [son].

Victoria’s premature son developed necrotising enterocolitis (NEC). She found the specialist hospital large and overwhelming after the smaller hospital where he had been cared for previously.

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Age at interview: 31
Age at diagnosis: 31
So we went over to [Women and children’s hospital] for the first time and we had to go, that was awful because you got used to this really lovely unit where you knew the nurses, you know, they’d been amazing they’d seen you at that point at your worst, and you knew them they knew Bobby, to going to a massive unit at [Women and children’s hospital] where there was like eight rooms, you know, there’s, there’s the intensive care rooms they’re kind of there’s like ten incubators in there and it’s so busy it’s ridiculous yes they’re amazing at what they do but it’s so busy, so you’re on pins cos this is your son and they know him and I know him and I knew all Bobby’s little niggles what used to bother him. So we ended up at [Women and children’s hospital] and the surgical team came to see Bobby and they were like ‘Right we’re just going to treat him conservatively at the moment and see how he goes on.’ Bobby seemed to get better and made it onto basically over weeks, he was there for four weeks at this point and they were saying it was just the CRP just was, was going up and down kind of from about ten to 16 so they were happy with Bobby, sent Bobby back to [Smaller hospital] originally, and we were back there for a week then we got another phone call after that week at about 3 ‘o’ clock in the morning saying Bobby was, his tummy was distended he was having green aspirates and everything again. And they think he’d got NEC* again and you’re kind of thinking well, is this, is this happening again, you know, how can we be so unlucky that, cos Bobby was actually dressed he was in half an incubator ready to go to nursery he was on optiflow so, you know, he was doing so, so, so well and he started to try and latch on which was amazing, you know, after so many weeks. So we went back over to [Women and children’s hospital] and basically after about a week they did loads of tests on Bobby and found that he had what was called Post NEC Strictures so that’s where Bobby’s bowel had from the infection had healed but where the scar tissue had kind of restricted Bobby’s bowel so it made it, although it kind of faeces could get through it had gone quite small. So they need to go in and they prepped us for, Bobby was having a stoma basically what they were gonna do was go in remove the bad part of Bobby’s bowel and then give it time to heal so they were gonna put a stoma in so he was going to end up with obviously his bowel outside of his body and then a bag.

* 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. 
Some parents had a longer wait with their baby, as staff searched for a hospital with an available bed and arranged the transport equipment. Rebekah had her baby in her local hospital, and it took several hours for the incubator and ambulance to be arranged to take her to the specialist centre.

So it takes quite a long time for them to transfer them you have to go on this special ambulance so she wasn’t, once she started doing this vomiting to when she left was probably about four, four hours maybe, like they have to prepare them to go on a special incubator thing and so yes she was transferred straight up to, to [city name] and I’d had a caesarean so I couldn’t really go anywhere or do anything.” Rebekah

The hospital was often a long way away. At one point, Alix and Antonio were told that their son might need transferring to Scotland from their hospital in the south of England for specialist treatment. They started planning travel and hotels, but he improved overnight, so it was not necessary to make the journey. Nicky’s son was born prematurely and developed NEC*. As he was prepared for transfer they started to prepare for what would be a long haul as their baby recovered with the specialist care he needed.

Nicky and her husband prepared to follow their son to the specialist hospital. They knew they were in for a long haul.

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Age at interview: 39
Age at diagnosis: 39
Let me think, I think he went late afternoon early evening because I think we got down there I think it was about 9 ‘o’clock and we saw the, the transport team as they were coming out of the unit and I think he’d been there about an hour at that point so I think it was early evening. So it had taken, I think it had taken until probably early afternoon to locate a bed and then make sure transport was available and tie everything up. And then obviously for them to come over and then it takes a good hour and a bit for them to get him set up and transferred onto another transport kit incubator, ventilator all the medicines onto their, [syringe drivers], his drivers.

Did you watch all of that?




So that was on a sort of moving trolley is it that they put everything on?

Yes, yes.

And with a dedicated team?

Yes yes they have their own neo-natal transport which is for their area so they’re actually having to go out of the area down to [city] but fortunately they were available to do that and I think had they not been available to do that than they would have been going to see if any of the other neo-natal transport teams could be available to step in but fortunately they were able to do that.

And that’s a nurse and a doctor presumably?

Yes, yes.

And so you sort of pack them off on the ambulance do you and then drive there yourself?

Yes, yes we actually came home because we knew that there was a long haul involved, we hoped there’d be a long haul involved so rather than just tear down following the ambulance we decided to come home have something to eat and pack a bag. We’d booked a hotel for the first night but it transpired over the afternoon that they’d actually got accommodation at the hospital and luckily we were able to cancel the hotel [laughter] without being charged. so we sort of came home and said right what do we need for, we sort of took enough stuff down for a week or so to start with rather than sort of just fly down there and then thinking well we’ll need X,Y,Z and we haven't got it and then it’s an additional hassle so we sort of came home and collected our thoughts [laughter] and our bits and pieces and then drove down after I think we got there about 9 ‘o’ clock something like that.
Mothers left behind

Babies were often rushed away after birth for the intensive care they needed. But this meant their mothers were often left behind for several hours or days as they recovered physically from birth. Caesarean deliveries often compounded their difficulties. Donna and Rebekah had both had a caesarean so couldn’t follow their baby immediately. Donna discharged herself and was cross the ambulance wouldn’t take her with the baby. 

So then it was about half five, about half five in the morning when an ambulance turned up to take him away I, we couldn’t go with him I wasn’t allowed with him cos I’d had a caesarean so if something had happened to me in the ambulance on route they can’t deal with two patients”. Donna

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

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Age at interview: 42
Age at diagnosis: 41
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. 

Rebekah did manage to see her daughter before her operation. It meant a lot that she was able to see her before her surgery.

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So she had the surgery on her own cos I still was in hospital so yeah, she, she had the surgery, actually no, no, I managed to escape that’s right I think I escaped before she had her surgery but we weren’t there when she had her surgery so yeah I, I managed to escape out of hospital and go and see her for a sort of, we only went up for about an hour or two because she was in an incubator and hooked up to all sorts of stuff, there isn’t actually a lot you can do and I’d just had the caesarean so you’re massively uncomfortable I was sitting on a tall swivel chair trying to, you know, hold her hand through a – a, it wasn’t ideal and she didn’t know we were there and, you know, I didn’t, I was sort of worried about her but she was in the best place so there wasn’t a lot I could do really. But I just wanted to see her before she went into that surgery because if anything had happened to her and she didn’t come out I wanted to know that I’d touched her and, cos I’d only held her for sort of an hour before she’d been taken away so.

*Footnote definitions: 

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.

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. 

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.

An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.

An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. A hole is present next to the umbilical cord through which the baby’s intestines protrude into fluid around the baby while in the womb, and outside the baby’s tummy after birth.

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

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