A-Z

Parents’ experiences of neonatal surgery

Birth planning when something is wrong with the baby

Once parents had a diagnosis, planning for the birth of their baby started. Some parents were already being cared for in hospitals that could cater for their baby’s needs (such as teaching hospitals and hospitals that were centres for paediatric surgery). Others were transferred to their closest specialist paediatric specialist centre for both maternity care and their baby’s care, or had just their baby’s care transferred to one hospital, while maternity care stayed in the original hospital. The hospitals offering paediatric surgery were most likely in a nearby city and travel times were often long (see ‘Transferring the care of mother and baby to a specialist hospital’). There were lots more appointments and scans, which could take up a lot of time, and this was a worrying period. 

The hospital did everything they could and gave us a tour, and showed us special care and they explained how she would go down to intensive care. But you still can’t quite, until it happens to you, you just don’t know what it is going to be like”. Jane

Some of the aspects of planning the birth and meeting with surgeons helped parents cope with the uncertainty and waiting. Shanise felt “reassured we had a plan”.
 

Shanise felt huge relief after meeting the surgeon. She was given the best and worst outcomes, and she understood more about the road that lay ahead.

Shanise felt huge relief after meeting the surgeon. She was given the best and worst outcomes, and she understood more about the road that lay ahead.

Age at interview: 23
Age at diagnosis: 19
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I saw her, I saw her on, I think I saw her twice and I saw her quite late on about 33 weeks I think it was, 33/34 weeks cos I remember I couldn’t get a scan photo, a nice scan photo, I saw her twice.

Okay and that was, that was the point at which you felt reassured?

Reassured and we had a plan.

Okay.

To focus on.

And can you remember what that plan was?

Basically [son] would be born he, whether so basically, first of all I was asking the question would I give birth naturally because I wanted to give birth naturally I didn’t really want to have a caesarean. And she basically said yeah, absolutely you can give birth naturally however we will have you on a list of for emergency C section just in case as obviously there were quite a lot of complications, obviously I was a first time mum so I didn’t know what I was heading into a labour anyway but obviously because of [son] it was gonna be more complicated. She told me that there would be quite a lot of people in the room, she explained to me who would be in the room so it was like there’s not gonna be any strangers it’s gonna be, there’ll be like obviously a nurse from neo-natal there’ll be she said like a paediatrician, I don’t know how to say that word but, yeah there would be obviously a doctor there’ll be, you know, I think there was about four or five people in total that will be in the room. And then she said obviously there’ll be your midwife there and obviously like your mum or your partner. So I knew who was gonna be in the room cos obviously it’s quite a traumatic stressing time. She also told me as well what would happen she was like ‘Right so you’ll give birth to [son] and you will see him before, they won’t just whisk him away,’ cos obviously that, that just felt, she was like ‘Obviously you won’t be able to cuddle him but like you can see him,’ so obviously that just gave me relief cos you’ve just given birth and the last thing that you want so for them to take the baby straight away you’d just given birth. The and then she explained like, you know, you’ll just get bog standard shop bought cling film and wrap his bowels round it he will then go onto an incubator, transportable incubator she showed me an incubator as well when she took me around the wards we knew exactly what it would look like. And then she said they’ll take him off and what they’ll do is they’ll get his she mentioned two different types of silo* bags that they would use depending on how [son] is with his bowels. 

She gave me the worst outcomes she gave me the best outcome so you just knew that what which one we will be taking so we heard back from neo-natal [unit] saying okay so his bowel’s a little bit larger then we knew that we’d put them in a silo bag or if his hole, his hole is too small they’ll have to cut open his cut open his hole a little more so they can put it into the silo bags cos it wouldn’t attached properly but then his bowels where too big for them to sew back in. She just gave me like different options of what would happen so we knew what we could be facing and what road we’ll be going down. And then obviously things are more serious or not a lot serious they would, we’ll know what path we would be taking basically. Yeah she just basically gave me a huge relief like I knew where I, knew where I was at, it was lovely. And that helped big time people commented saying in terms of how much that really helped us and I think she did that with every parent who knew they was going to be in neo-natal [unit]. And that was a 15/20 minute appointment that helped us for weeks, like it was lovely.

* Silo
Used as part of a staged repair for exomphalos and other abdominal wall defects. A temporary envelope of plastic sheeting (silo) is created outside the abdomen. The silo is made smaller over a period of days or even months, so that the abdominal contents are gradually pushed back inside the abdomen.
Zoe’s daughter had been diagnosed with gastroschisis*. The visit to see the hospital and meet the neonatal consultants was not a happy visit, but did reassure her.

“It wasn’t a very happy visit, but it did reassure us a lot as well that the outcome can be good it just takes a long time to get there, so yeah…..I don’t know if it was the first appointment or the second one that we got told that, normally by their first birthday they can eat their birthday cake and that kind of gave us quite a bit of reassurance that she’d be able to eat everything so, yeah.” Zoe

The remainder of the pregnancy was hard for parents, as there was often a lot of uncertainty about the extent of the anomaly and how well the baby would be after birth. 

We were told that it’s very difficult for them to give figures and survival rates because every child is different…” Fiona and Mike

As Claire said, “It was a bit difficult for a surgeon given they have not actually got a patient to talk to or work with.”

Meeting the surgeons

Parents generally found their meetings with the surgeons helpful, although they were not always reassured by what they heard. They commented that it was good to have realistic information even though the surgeon could not give them much certainty. Surgeons explained more about the condition, what was likely to happen to their baby after the birth and what the treatment options were. For example, in a condition like exomphalos (a type of abdominal wall defect)*, if the exomphalos is small, closure surgery would be straight away. For babies with a large exomphalos, closure surgery was likely to be later on, and other approaches like a silo* and “paint and wait”* were planned first to encourage the sections of bowel outside the body back in.
 

Claire found the meeting with the surgeon helpful and was reassured to feel she was on the same page as him in his conservative approach.

Claire found the meeting with the surgeon helpful and was reassured to feel she was on the same page as him in his conservative approach.

Age at interview: 34
Age at diagnosis: 33
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Yeah, we had an outpatient appointment with one of the paediatric surgeons and that was really helpful and he was very thorough and spent a long time with us, which, you know, I think bit difficult for a surgeon given they’ve not actually got a patient to talk to, but or to work with but he was he was very thorough. Again, I might have anticipated that he might have been a bit more positive about [son]’s chances but he was very realistic and pragmatic. The hospital that [son] had his treatment at favours the paint and wait approach. So we talked a lot about whether, you know, what circumstances might they consider doing an early closure surgery. But it was really apparent that [son]’s exomphalos was going to be very big. So he told us, at that point, that they would use the paint and wait approach and be very conservative in the management of that, which turned out to be absolutely the right thing to do.

But I felt, we felt that’s what we would have preferred having read a lot about it before the appointment.

So it was reassuring to feel that we were on the same page with the surgeons.

And you had a look around the children’s hospital.

Yeah.

Was that different to the hospital that you were being treated at?

Yes, so I was at the women’s hospital.

Obviously the appointment with the surgeon and [son]’s care, it was, we didn’t know at that stage. We knew that he would have to have a surgical opinion but that might have been that the surgeons visited him at the women’s hospital or it might have been that he was transferred to the children’s. 

So they basically said we’d got to kind of wait until he’s born to see whether they would stabilise him at the women’s and then have the surgeons visit him at the women’s hospital and see or whether they would transfer him across. And, at that time, my preference very much was, if possible, and they were going to take a conservative approach for him to stay with me at the women’s hospital.
Jane was told by surgeons that because her baby’s exomphalos was so large they couldn’t really predict how they would handle it. Sally-Anne and Simon came away from their meeting with the surgeons feeling more positive and confident, as they had clearly dealt with their son’s condition before. 

“And I must admit when I come out of that I did feel a lot more positive, you know, it was, they’d give us that little bit of light, you know, that they’d dealt with this before and it wasn’t just, you know, our child just wasn't gonna be the only one, you know, they'd seen it before, so that was quite positive.”

For babies with gastroschisis, the surgery was likely to happen more quickly. Ally found her meeting with the surgeon clear, with all her questions answered. She was reassured that the surgery wouldn’t be an emergency so if her son was born in the middle of the night it wouldn’t be a problem.

Some parents didn’t feel comfortable with the first surgeons they met, and so sought out alternatives. Joe wasn’t confident that her first surgeon had enough experience of exomphalos and so found a recommendation of a more experienced surgeon through a friend. Amy had found her first surgeon’s approach very bleak, and so transferred to another specialist hospital where she felt more comfortable. She, like others, felt confident to be in the hands of highly specialised medical staff. In a sea of uncertainty if felt like the one thing they could draw strength from.
 

Amy felt more comfortable in the second hospital she tried. She felt it was the right place for her daughter’s care.

Amy felt more comfortable in the second hospital she tried. She felt it was the right place for her daughter’s care.

Age at interview: 39
Age at diagnosis: 33
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I have to say, that was one of the things that I appreciated the most. I’d gone into the hospital when I was pregnant, for that very first appointment and, when we were changing hospitals, and the surgeon said, “The care that you’ll be given here is the same as the care at the hospital you are at now.” And I said, “But I feel different here.” And I said, “I feel like I’m part of the client group, you know. It’s a baby and I feel like we are a family unit as part of it.” And I said, “Do you know, when I walked in this morning, we went into the café.” Sorry, I feel really emotional when I say this but it’s something so simple, there was woman behind the counter. So she was helping people and she saw me and she said, “Good morning.” Something so simple, but I felt so comfortable in that moment. And I just thought, no, this is where I want to be and this is where I want my baby treated. And something so simple but so effective and that woman will never know that that “good morning” meant so much. Sorry [sniffs].

So we then went upstairs and had a tour of the ICU and the hospital had a pamphlet and the pamphlet was about abdominal wall defects. Again, something so simple but I took that pamphlet away and I went, “This is where she needs to be.” I’d seen other babies in the ICU that day with exomphalos*. I mean they couldn’t tell me but [laughs] I’d seen enough. I could tell that their organs were outside their bodies and I knew that this was the right place. It felt right and I think that it’s just with anything now, as a parent. You know, finding that nursery, finding that school, you know when I feels right and this felt right and I felt comfortable. And so, you know, that was the place where I wanted her to be treated and, you know, I mean my partner was with me on it and it felt really like this is the right place.

* 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. 
Seeing the hospital

Parents were often offered a tour of the facilities where their baby was likely to be cared for, which could be helpful as well as a little frightening. Parents were commonly advised that their babies were often going to need to be in neonatal intensive care (NICU)* for several weeks. These can be scary and daunting places, so to have seen one ahead of time, and met some of the staff, was reassuring. Louise was expecting twins, one of whom had a congenital diaphragmatic hernia (CDH)*. The NICU was scary with all its beeps and busyness, but it was good to see it ahead of time. 

“They took us around because it is quite a scary place with all the beeps and things going on and the alarms going off all the time.” Louise
 

Amy E found the tour of NICU* really helpful. She was able to speak to the staff and it took away some of the scariness of it all.

Amy E found the tour of NICU* really helpful. She was able to speak to the staff and it took away some of the scariness of it all.

Age at interview: 32
Age at diagnosis: 29
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They, what did they- one of the good things they did is they offer you a tour of your neo-natal unit if they know you’re gonna be in there, which obviously they can’t do for everyone so we did have a tour of that. And that helped me because the first time I walked in it wasn’t the first time I walked in there it was I’d already been in and looked round, it really upset me when I walked in there and looked round when I was pregnant. But there was another baby with Gastroschisis* in there who was a really simple case so I was really hoping that we would be like that but we weren’t. so, and just to see the rooms and see how they work and speak to the staff and the staff spoke to me and said you know, like we have the ward rounds, you can’t be in here for the ward rounds you have to leave and all things, just pace, that was really good and I think they should definitely carry on with that because if you can just seeing it first takes away some of the scariness of it. 

And also we met the consultant surgeon Dr [surgeon] who’s did her actual surgery the second lot of surgery beforehand and he basically sat just sat and told us how it was, very matter of fact about it but that’s what I needed, I needed someone to say this is what’s going to happen, this is what will hope if this happens.

*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.

*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.
Planning the birth

Parents were told that the birth of their baby was likely to feel quite busy. In addition to midwives and doctors for the mother, there would also need to be paediatric staff on hand to take immediate care of their baby. 

There are different approaches to the best way to deliver exomphalos and gastrochisis babies, which depend in part of the severity of the anomaly and the mother’s health. Some women we spoke to were encouraged to have a caesarean delivery, and others were encouraged to have a vaginal birth, but with an induction so that all the necessary medical staff could be on hand.

Perhaps due to lack of research evidence about which option is best, the advice was often variable. Some parents were told they had no choice, others were advised to have a vaginal birth even though they wanted a caesarean, and visa versa. Some mothers told us they never even knew that a caesarean was an option, while others planned for a vaginal birth and landed up with a caesarean.
 

Jane had a lot of discussion with her consultant about whether she would have a caesarean or not. There were pros and cons on both sides.

Jane had a lot of discussion with her consultant about whether she would have a caesarean or not. There were pros and cons on both sides.

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At what point did they start to discuss with you the birth plan and what was going to happen to the baby when she was born?

[Laughs] there was quite a lot of debate about it because my consultant was actually quite keen for me to have a vaginal delivery and because of my experience with my previous daughter, I wasn’t so keen. And I think a lot of mums that I’ve been in touch with, it, it feels, it feels quite scary. And also, you know, because I was so into Googling and going on the internet I think when I looked at the research that stuff was being based on, I could see what a small sample sometimes things were based on [laughs]. So I’d be arguing the toss slightly and that, don’t get me wrong, I have enormous respect for consultants. I really do, but I think because this particular condition and because of the nature of my daughter was, they called it a giant exomphalos*. I mean it was really very big. So I think there’s that thing of things not being, you know, you can have something that for a smaller exomphalos is fine and you can get your head round. But for a larger exomphalos, could be really concerning as a as a mum.

And in the end, the liver was on the outside, not the outside, but on the inner edge, that’s not the way, right way to say it. The liver was in a very exposed position on my daughter’s exomphalos.

And the decision was that it could actually be very badly damaged during delivery, so I had a caesarean in the end.

Okay and how many weeks was she at that stage?

She was thirty nine weeks, yeah.

And did you find that discussion easy, easy is the wrong word, but you felt it was a constructive…

Yeah.

…discussion?

Yes. I didn’t feel that it was just like ‘you’re going to have a vaginal delivery and there is no discussion about this and my word is law’. It was very much a, ‘well, this is what we’ve experienced and this is what we’re seeing in other hospitals.’ And, and also very valid point, which is to have a child in intensive care, having had a caesarean section is a bit of a nightmare [laughs]. So I, I totally understand, having experienced that, why the consultant thought it would be a very good idea for me to have a vaginal birth, if at all possible. Because, having had major surgery and have a child in intensive care is, and the problems of driving. I mean it’s just, yeah, it’s not good. So and, of course, I don’t know what the birth would have been like, you know. I know they would have what’s the word, where they bring the birth on?

Induction.

Yeah, so they would have induced me because, of course, you have to have everybody at hand and you can’t, you’re not allowed to go into, into labour normally. So again, that can you know, be quite a full on experience, from what I understand, from what friends have told me. So and, actually, what we know about [daughter]’s respiratory problems, I think a vaginal delivery could have been a real problem. But they didn’t show up on the scans. There was no indication before she was born that she had lung, lung difficulties. So going on the information that the doctor had from the scans, I think his, his angle on that was perfectly reasonable. But I was quite relieved [laughs] that, that was taken out you know, that we didn’t have to have any more discussion about it, basically, so.

* 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. 
Continuing the pregnancy

In some cases, parents said there had been conversations about whether to continue the pregnancy. Some parents felt there had been a pressure to terminate their pregnancy, which they found unwelcome.

I always felt by this doctor that there was a pressure to terminate, that I wasn’t making the right decision. Now I think some partly that was them or and maybe partly how I was interpreting. But I felt like I should have terminated in in the eyes there and that wasn’t something I was prepared to do.” Amy

Because all of the people who took part in our study were people who had experience of neonatal surgery, we did not include people who chose to terminate a pregnancy. But you can read more about people who did make this choice on our website ‘Ending a pregnancy for fetal abnormality’.
 

Harry and Michelle felt very well prepped for the birth of their son, who had gastroschisis*. They had seen the NICU, met the surgeons and were prepared for the induction.

Harry and Michelle felt very well prepped for the birth of their son, who had gastroschisis*. They had seen the NICU, met the surgeons and were prepared for the induction.

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Michelle: A lot of the time it’s around… 

Harry: I thought we were pretty well prepped through the process.

Michelle: Yeah

Harry: And with every eventuality and we did actually meet, I can’t remember at what time the neo-natal team.

Michelle: That was just after 20 weeks because basically after that 12 week and the next day you go back and meet the high risk team then from then until 20 weeks you’re pretty much left alone, so that’s it you’re just ordinary pregnancy because there’s nothing they can do until they then look again at 20 weeks and then from 20 weeks onwards you then have very frequent scans and the week after the 20 weeks we met the team that were going to be dealing with dealing with the baby. So we met the surgeon, the head of surgical unit who actually ended up being our surgeon, was fantastic, so we met the neonatologist we met the surgical nurse and, you know, all had a meeting to discuss the various options that there may be during the surgery, there are a couple of different ways that they may put the bowel back in depending on the condition of it.

Harry: Explained the process.

Michelle: Talked through the process we toured the NICU* which sounds fairly grim but actually was really helpful because we knew then what to expect and we went into intensive care and we looked at some of the other, you know we got to see some of the nurses and got to see some of the set up. Which actually means that it’s a little bit familiar and actually the set up in the hospital that we were in was fantastic because the, it meant that if we chose to have the baby there the labour ward has double doors straight into intensive care. So we had the baby and literally he was pushed straight through, so it was good.

Harry: That discussion with the high risk team in the neo-natal surgery team was very structured, very calm they explained the process, the birth process what was probable thereafter so the facts and simple stuff like you assume, everyone assumes that it’s not that you can’t have a natural birth because you, well for obvious reasons. But that’s not the case in fact it’s perfectly normal to have a, have a natural birth and that was explained which was a relief.

* 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.

*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.
As well as planning the actual birth of their baby, parents also took the opportunity to work out some of the practicalities of what lay ahead for them. Some had been told to expect to be in hospital for several weeks or months, so they started to think through how they were going to cope with the travel, staying over and looking after other children. Ally was expecting to be in hospital with her new baby for several weeks after he was born. It was over an hour’s drive away, so she arranged for her mother to come and stay to look after her toddler. But it was a worry knowing when she would need to arrive, and whether they could get accommodation in or near the hospital.
 

Ally did find it a worry planning when to have her mother come to look after her toddler, and if she would get into any hospital accommodation once her baby was born.

Ally did find it a worry planning when to have her mother come to look after her toddler, and if she would get into any hospital accommodation once her baby was born.

Age at interview: 37
Age at diagnosis: 37
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Yeah because our family aren’t over here in the North West we had to plan for that, so that my mum could come over and plan with her to come over and basically just have [older son] she was originally going to be down for three weeks and then we’d see where we were at. I suppose the uncertainty was we knew there was a Ronald McDonald House we didn’t know if you could get it and you can’t pre-book it obviously you can only get a place once you, you’re in the unit and the nurses do a referral for you. So that did play on my mind what would we do if we couldn’t get anywhere that I suppose was my biggest worry. So towards the end obviously I knew I was going to get a date for my induction but I wanted that date so my mum could know when she needs to come down and just, and just plan from that day and have a few people on standby and things. Yeah it was just, as if we were going to get accommodation in [city].

*Footnote definitions:

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.

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.

Silo
Used as part of a staged repair for exomphalos and other abdominal wall defects. A temporary envelope of plastic sheeting (silo) is created outside the abdomen. The silo is made smaller over a period of days or even months, so that the abdominal contents are gradually pushed back inside the abdomen.

“Paint and wait” technique
Doctors may use a technique called ‘paint and wait’ to treat exomphalos. The sac covering the baby’s organs is left intact and over time the skin grows over the sac. This may or may not be ‘painted’ with antibacterial treatments.

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.

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