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Parents’ experiences of neonatal surgery

Birth experiences of the parents in the neonatal surgery study

Of the women we talked to their experiences of the birth of their baby were very different, depending on whether their baby’s condition had been diagnosed before birth, and if so whether they had been advised or chosen to have a caesarean or vaginal delivery. Both those who were expecting a baby whose condition had been already diagnosed and those who discovered something was wrong at the birth often described it as a “surreal” experience, a bit like a dream or like watching a film or TV programme unfold. 

Birth after diagnosis in pregnancy

Mothers expecting a baby with exomphalos* or gastroschisis* had discussed and carefully planned their birth with doctors, surgeons and midwives. Many were booked in for a planned caesarean operation, and appreciated the feeling of control this gave them, as there was so much uncertainty about their baby’s health outcomes after the birth. Claire appreciated the planned caesarean for her son who had an exomphalos, she felt it allowed a level of control in a very unpredictable situation. But not all parents felt they had control. Zoe arrived at the hospital expecting to be induced the next day, but the induction started as soon as she arrived and her daughter was born a few hours later.
 

Sally-Anne had a planned caesarean, but found it hard knowing whether she was planning for a “christening or a funeral” for her son who had an exomphalos*.

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So planned caesarean?

It was a planned C section yeah. And then that was when it got really hard wasn’t it, I mean before, like I said before when I went down, before I went down to theatre, you know, met up with mum down in the, in the waiting room cos I’d organised for everybody to be there. There was both my mum and dad, Simon’s mum and dad all of my brothers and sisters as well as Simon’s because we didn’t know, we didn’t know the outcome of what was going to happen and I wanted them all to be able to see him, you know, at least if they could see him then if anything did happen they would have seen him. So that was one of my stipulations of when I went in I was like please just book the day off, I mean [son]’s birthday falls on my sisters birthday and that had gotta be possibly the hardest birthday card I had ever wrote. Because I’d got, I bought her an Auntie card and I write it from [son] and I turned round I’d said like to Si and I said to my mum, I said don’t give to her, I said not until we know [son]’s here, please don’t give it to her. So I went down to theatre, I’d already asked my mum if we was going to be organising a christening or a funeral because we just didn’t know, you know, I didn’t know, I didn’t know what to expect, I didn’t know what he was going to look like, I didn’t know if he was going to come out breathing for himself I was, I just, I just didn’t know. So I went down to theatre, I made sure, you know, I had a spinal, see so Simon could be there as well cos, you know, to me that was where he needed to be. So [son] was born wasn’t he, he was born at nineteen minutes past twelve weighing 7lb 12 ounces. So he was a nice, he was a nice weight considering we was told we was expecting a four and a half pound, five pound baby so Si always blames the ice cream. But then I mean [son] he didn’t cry, he didn’t cry at all to start off with and I mean I turned round and I said to Simon I said to him I said, “He’s dead isn’t he? He aint made it?” And that was when he started pulling all the blues back wasn’t it so that he could show me that [son]’s legs was moving and that feeling when I seen him kicking about that feeling it was yeah it was just, I knew then that we’d got that little bit of light, I knew. And then the consultant popped his head over, you know that delivered [son] and he was like he’s breathing, he’s breathing for himself.

* 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. 
But even so, it was not a normal experience. Jane said, “She got handed over to the professionals [laughs] and it was not a nice experience, and it was a very bizarre experience, not like a normal experience of having a baby at all.” 

Doctors may advise that a vaginal delivery is possible or may even be better for the baby, but it is possible that in this situation that the birth will be induced so the baby’s care can be organised in a planned way. Michelle and Harry’s baby had been diagnosed with gastroschisis and they really appreciated that they were supported in having as natural a birth as possible until the very last moment. Neonatal staff were ready and discretely waiting in the background to take their son away to intensive care (NICU)* as soon as he was born. The midwife made sure she had a cuddle with her son before he was whisked away.
 

Michelle and Harry were impressed by the natural birth they were supported in having, although the neonatal specialists were on hand the minute their son was born.

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Harry: 20 minutes up until point of delivery it would have been exactly the same process.

Michelle: Any other birth, any other induction.

Harry: As anybody else who was being induced.

Michelle: Absolutely.

Harry: Exactly the same although.

Michelle: Which I really did appreciate actually.

Harry: I suppose the one, the one variant was the midwife was a little bit inexperienced so she got a little bit nervous about breaking, breaking waters.

Michelle: Yeah we had to get other people, other people coming in and do those bits and pieces.

Harry: But apart from that, and then just as you go contraction getting bigger and all the rest of it the senior midwife who was giving you strict orders, she was not very good at following orders- 

Michelle: Yeah she came in, she was great.

Harry: And actually got a bit of focus going and they all came in.

Michelle: They did file in didn’t they. They were all waiting outside the door.

Harry: Most discrete I think there was four of them, didn’t know how many of them they just came in and were kind of doing whatever they were doing, kind of noise going on the usual kind of amazing experience and they just filed in and they just stood in the corner faced, faced the… 

Michelle: Prepared their incubators, prepared their scrubs who were getting ready.

Harry: Faced the wall and it was, you wouldn’t have noticed they were there at all. 
Amy E was expecting her first child, a girl who had been diagnosed with gastroschisis. She was induced at 37 weeks, and found waiting for her daughter, not knowing if she was going to make it or not, very frightening. A reassuring midwife comforted her. She described her as her “shining light”.
 

Amy E was very frightened as she waited for her labour to progress. A midwife was very supportive.

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Age at interview: 32
Age at diagnosis: 29
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So went up to [specialist surgical centre] and they did the scan on me and they said you need to have her now and ‘you’re gonna be induced now so go over to the birthing suite,’ and I said to [husband] ‘I knew it.’ So went in there and I was induced just with a pessary and at 36, 37 weeks I was just dead on 37 weeks had a couple of steroid injections and so it was all systems go. But because I was only 37 weeks and I just had the induction they left me for one day monitored up and then my contractions started within about 12 hours so I was quite lucky that worked. And I remember it was Wednesday afternoon that I got induced I had her on the Friday morning it must have been the Wednesday night cos I sent everyone home and I was sitting up cos I was monitored constantly and I just had a little moment to myself, one of the midwife’s caught me crying and cos I was just a bit overwhelmed because I was thinking, I didn’t want anyone to catch me crying but it wasn’t that I wanted attention I was just on my own in my little, my little curtains round my bed and just didn’t really, I just thought what’s to come I didn’t know if she was going to live I didn’t know what was going to happen to me, never given birth before. And I’d already been told I was not having any pain relief really other than gas and air so that kind of fear, cos I’d never done it before. And it was a busy, busy night in that place and that just scared me even more cos I could hear screams and stuff. But this midwife came across me, she was called [midwife], she was absolutely amazing and she just sat down held my hand and she went ‘I’m having a break in a minute I’m gonna come back and have my break with you.’ So we had a cup of tea together and she said to me ‘I promise you if you give birth overnight in the next couple of nights I will make sure I deliver your baby cos I’m on nights.’ So cos I’d told her how I felt, I felt like someone knows what’s going on. And so my contractions started the next day and they were going stronger and stronger and stronger and I got finally moved to my own room and they were coming in all the time, I didn’t really know how close I was, but they examined me and said ‘Oh you’re only 1cm,’ only 1cm, they’re coming like every five seconds, you know.

And when I got to my own room I realised then, cos afterwards they told me they were keeping me back because they wanted me in the room closest to intensive care unit so that they could get her in there but I didn’t know that at the time. And so I got in there and I had my mum and [husband] with me, my husband, and then I got to the point where I was saying I want an epidural and they were saying you can’t have one, you can’t one and I was like, great, but it got to the point were I said to my mum I need to push I was screaming, you know, I need to push and no-one was in the room just me and mum. And this is, I’d suffered with it with this pregnancy like being really anxious and fearful of this birth because of mainly cos of this bit but no-one believed me that I needed to push. And I remember the midwife saying to me ‘You don’t need to push,’ and saying to my mum ‘She doesn’t need to push, she’s just a first time mum and she’s had enough.’ And I remember my mum who’s quite, quite prim and proper normally shouting at her saying ‘If my daughter says she needs to push she needs to push just check her.’ Cos I remember thinking at this point feeling like I was holding her back and thinking I cannot have her in this room with just me and my mum cos [husband] had gone off somewhere, because she needs help and there’s no-one here and I don’t know what to do and no-one believed me it was so frustrating cos I was strapped to a bed and I couldn’t, I couldn’t even shout, cos you know, the contractions. My mum did the shouting for me and the midwife checked and I remember her the midwife’s face almost going into a bit of like yeah you do need to push and then she made a phone call and a tannoy announcement came out which I heard which said basically neonatal crash team to my room and that made me worse cos I thought oh my God, oh my God, oh my God, you know. So then out of like a shining light… Out a shining light, [midwife] just appeared in the room and at that point I closed my eyes cos there was about ten people in there and I just thought I can’t keep looking at everyone in here. And she just took over and I remember her saying ‘[Name] it’s [midwife] I’m here I told you I’d be here’ and I just thought right I can do this now and she talked me through, you know, giving birth, gave birth and [daughter] just got taken straight off and I went into a bit of shock afterwards cos I’d, I just thought I’ve never shaken like that before, but she bear hugged me like that and cos everyone had gone with [daughter], which is what I expected, I didn’t want anyone with me but she stayed with me, bear hugged me and that made me stop shaking cos I was shaking so much I was going to fall off the bed.
Several parents described worrying moments when their baby did not cry out straight away. In some cases, their baby needed to be resuscitated. Sally-Anne was on tenterhooks, and relieved when the covers were pulled back and she could see her son’s legs moving. Hayley and Thomas’s son wasn’t breathing when he was born and was taken down to NICU.

Lots of people in the delivery suite

Something that parents remembered vividly was that there were a lot of people in the room. In addition to the doctors and midwives needed to look after them, there were also neonatal doctors and nurses on hand to take immediate care of their baby, either already in attendance, or called as an emergency. Some mothers found this reassuring, others overwhelming. Amy E said, “I just closed my eyes ‘cos there were about 10 people in there and I just thought I can’t keep looking at everyone in here.”

Jane’s daughter had an exomphalos, and she has been back to the hospital regularly over the years for follow up. She joked that every time she goes to the hospital she’ll see someone who was at her daughter’s birth - it felt like there had been a “cast of thousands”. Hayley and Thomas’s son had an exomphalos. The room filled up with about 8 or 9 people as he was about to arrive.
 

Alison’s son had an exomphalos, and she was induced. She found the crowds at his birth invasive.

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And I know it was a long time ago but can you remember what the room was like were there a lot of people in there?

Alison: Yes, yes there were three paediatric doctors.

Martin: You wrote it down didn’t you.

Alison: Wrote it down, and two paediatric nurses and somebody else I can’t remember who else and plus ourselves so. And I remember there was a door at the bottom with a window and I remember people looking, medical, you know, medical staff looking through the window as well so it felt a bit like a, Euston Station with everybody looking and whatever and that I think was because it was so unusual, you know, that there was a lot of interest really. So yes there were a lot of people in the room.

Okay, was that reassuring or did that just feel a bit invasive?

Alison: It felt quite invasive really.
To hold or not to hold

Some mothers were not able to hold their baby after he or she was born. While they understood it was necessary to rush them away to intensive care (NICU), it was still a source of great sadness and distress. Jane was relieved that her husband was able to follow her daughter wherever she was taken after birth.
 

Jane was prepared, but upset not to be able to be with her daughter after birth.

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Was your husband in the room?

Yeah, which I think was a bad idea on reflection. But yeah, I think for people waiting at home and that kind of stuff, I think it was really very hard. And I ended up losing a lot of blood and I had to have two blood transfusions, which complicated matters as well. But before, beforehand they’d said, you know, that my husband would be able to basically, follow my daughter around once she was born and, you know, even though obviously I couldn’t go, that he could follow her everywhere, which was great because at least, I mean there’s no, it’s not natural to have your child, basically, you know, “Here’s your baby.” And I think I was allowed to, you know, kind of pet her a bit but it was like, “Here’s your baby. Oh stop, you know, now we have to take her.” Which I knew was going to happen but it’s not, it’s not natural. But the fact that my husband could go with her and I knew he was right next to her, that made a big difference I think.
Some mothers were allowed a cuddle with their baby before they were whisked away. Ally’s son had gastroschisis. She was given a quick hold of him before he was taken away to be stabilised. Zoe described the room fill up just before her daughter, with gastroschisis, was born. She was allowed to hold her briefly. 

I got to hold her for probably not even a minute and then I could see her in the corner to my left and there was just people all around her I couldn’t really see what was going on there was like a tiny wee gap I could just about see her face.” Zoe

But some women told us they did not feel well enough themselves to want or be able to have a cuddle in those first few minutes. Ally said, “I didn’t feel comfortable”, Joe was unwell herself and felt too ill to hold her new daughter. 

Parents who had spent months waiting nervously for the arrival of their son or daughter with a congenital* anomaly like exomphalos or gastroschisis described their concerns about whether they were going to be horrified by the appearance of external bowels once they were born. But Barbara and Hayley and Thomas were relieved to find they looked past these to the baby in their arms. Barbara was able to have a quick cuddle with her daughter who had gastroschisis. She was relieved to find she still loved her. 

“And then they gave her to me in the little bag for a cuddle and I was really relieved to still love her even though she was you know, you could see this bag of bowels, you know, and I was concerned about how I might feel about that. But, you know, her little face was just perfect, absolutely perfect so I just looked at that didn’t look at the bag, had a little cuddle with her.” Barbara
 

Hayley and Thomas’s son had an exomphalos. But after months of scans focusing on the anomaly, it wasn’t the main focus once he was born.

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Hayley: And it’s really strange because when you’re pregnant you do you focus so much on the Exomphalos* and what it’s gonna look like and how you’re gonna feel when you see it and I don’t even remember seeing it, do you?

Thomas: I do a little bit, but it wasn’t the, it wasn’t the main focus.

Hayley: No which was just strange because when you’re pregnant that’s all you think about.

Thomas: It just looks like a water ball in that sort of way, that’s what it looked like. I looked at in the first instance and then it was more the focus was on him, if you know, cos he wasn’t breathing properly.

Hayley: Yeah.

Thomas: In that respect. I think that was the first indication that there was, there was trouble with his lungs.

* 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. 
Discovering the diagnosis at birth

Some parents we spoke to had babies who developed complications shortly after they were born. Alix had a natural birth in a waterpool, but immediately staff realised there was something wrong. Her son was covered in meconium and not breathing well. The crash team was called.
 

Alix and Antonio were stunned to be watching an emergency playing out in front of them. It was not the script they had planned.

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Antonio: Right, which probably I was lost in translation I didn’t understand what was going on but I saw [mother-in-law]’s reaction just leaving the room and shouting crash team please come. But then because I was helping Alix coming off the pool I had the, well the whole stage in front of me and I saw just that little head coming out was all covered in very black or creamy consistency, I don’t know it was just all, his face swollen.

Alix: Swollen.

Antonio: Swollen and covering this liquid. But then when they said meconium because I heard one of the nurses saying he’s covered in meconium as the follow…. following phrase from crash team please come in. I thought no this is just meconium because we had been in the NCT classes and we knew those things could and I know that it’s a normal condition and that will not require much intervention. So I was, I was quite relaxed after I heard just the meconium phrase but again we were not listening a cry yet. So I came closer to the baby because our plan was that the baby was going to come out and I was going to help cut the cord and so on but then the next thing that I saw.

Alix:…and hold him for a while, so connected… 

Antonio: But then the next thing that I saw was a group of probably two or three people coming into that place and then probably the next contraction came and the baby just, plop, [slap] went down there on the bed and I saw all the blood and it was just a face covered in meconium but the rest of the body was like covered in butter and then all these team that came closer just started to follow their procedures and cut the cord and not even asking a question, not even asking for who are you, nothing to me just did what they needed to do. And took [son] to the well I don’t know this is a small unit that they, by good luck it was just outside the room where we were so it was quite easy to bring that. But by that time it wasn’t only the midwives and these other 3 nurses it was probably a team of eight or ten people inside the room. So we were quite shocked we didn’t understand what was going on.

Alix: I didn’t, again I didn’t understand anything because in the room, you know, the pool was in the main bit of the room, the bed was at the side, I was knelt, because I was now in the back of it I was facing into the corner and all I knew was he, you know, sort flop I could feel that flop.
For more see ‘Hirschsprung’s disease - getting ill & diagnosis’ and ‘Getting ill & diagnosis of other conditions needing neonatal surgery’.


* Footnote definitions:

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.

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
A congenital disorder, means it is present at birth, sometimes known as a birth defect, is an error of development that occurs before birth.
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