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. 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.
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.
Michelle and Harry were very lucky that their local hospital was where the specialist surgical team for their area was based.
* 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.
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.
Hayley and Thomas had a two-hour journey to the specialist hospital for scans on her baby.
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.
Why?
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.
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.
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.
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.
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.
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.
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.
* 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.
“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.
Nicky and her husband prepared to follow their son to the specialist hospital. They knew they were in for a long haul.
Did you watch all of that?
Yes.
Yes.
Yes.
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.
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.
Mary was recovering from a placental abruption, so could not be with her son long before he had his operation.
Rebekah did manage to see her daughter before her operation. It meant a lot that she was able to see her before her 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.
*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.
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.
Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.
Copyright © 2024 University of Oxford. All rights reserved.