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Parents’ experiences of neonatal surgery

What happens to the baby after birth when neonatal surgery is needed

For parents who had a diagnosis during pregnancy, birth was finally the moment when they would find out more about their baby’s chances of surviving. Often scans had only been able to give a rough idea how severe their baby’s condition was, and surgeons had warned them that they would have to wait until their baby was born to be sure. 

So the moment of birth and seeing their baby for the first time was a particularly emotional and anxious time. Even remembering that moment years later was upsetting for some of the parents we talked to. Often parents used the word ‘surreal’ to describe how it felt; Nicky said it was “like you were watching it from the corner of the room or something, going through the motions”. Louise said she felt “numb”. 

Ally’s baby was found to have a condition called gastroschisis where there is a hole in the tummy wall*. The doctors who had done the scans before birth had discussed that they would not know what condition the bowel would be in until the baby arrived. She had been told that the surgeons may need to put her son’s bowel temporarily in a bag called a ‘silo’*.
 

Ally went to see her son in the NICU in the early hours of the morning. His condition was worse than the scans had suggested.

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Age at interview: 37
Age at diagnosis: 37
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Yeah that was about 1 ‘o’ clock (am) like I said it took a while for these pain to subside with me and by the time it got sorted across the maternity ward because it was about 1:00. And so we explained look he’s [husband] gonna have to go all the way back here to [home town] to come back again and they were really good there kind of was like a single room on the maternity ward and [husband] was able to stay in there one night so that, that was really helpful and obviously the next day we got Ronald McDonald. And then we went to see [son] at 1 ‘o’ clock on NICU and the surgeon was actually there then and that was the surgeon.

1 ‘o’ clock in the morning you went to see him?

Yeah.

Wow, okay.

And it made him all comfortable in his little incubator and at that point he hadn’t had his silo* put on but the surgeon had looked at his bowel, there was a lot out there’s more out than you’re expecting. What I found with the scan, sorry I’m jumping back, but with the scans whilst they were looking for I suppose dilation and serious sort of anomalies where they might have to act and do we need to do something with the baby if they need to come early. And talking to [name] who was doing the scans he was basically saying ‘Look I can see what I can see, but until he comes out I might think something’s dilated but actually when babies born it’s quite healthy or might be the other way round.’ So again while we were having these scans we are very much aware that until he comes out we don’t really know exactly what we’re dealing with. And like she said there was more out than we’d anticipated, I’m not sure if it was more than the surgeons had anticipated but I think his stomach was out as well I seem to remember them saying that we were just expecting it to be bowel.

* 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.
 

Louise’s twin son was diagnosed with a congenital diagphragmatic hernia (CDH)* but she had been told they wouldn’t know until he was born what his chances of survival were. Five years on, she still finds the memory of her first visit in NICU upsetting.

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Age at interview: 32
Age at diagnosis: 26
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So they told you he had a heart in his, sorry a hole in his diaphragm.

Yes.

And did they say if he did make it, what was the, was there going to be a problem was he going to have surgery or?

Yes, they said when he was born they wouldn’t know pretty much until he was born what, you know, until they could examine him, how serious it was, they could see it was a pretty large hole because of all his intestines and things were up in the lung, in the chest area. They advised that after he was born he would need to get him stable and they said all the baby’s don’t, some of them don’t even get to that point where they’re safe and healthy and strong enough to operate on, so we knew the first few days were crucial. And they actually woke me up, I had a caesarean section at 35 weeks because of my pre-eclampsia they, I had the steroids and the works. They, after we had the caesarean they were concerned for both of them obviously they were premature [first son] didn’t make a sound so they thought there might be something wrong with him but he was just being a little bugger and he started screaming as soon as they rushed him off to the ward, the high dependency ward, he was fine. They woke me that night to take me to the high dependency in a wheelchair to pretty much say goodbye because they said it didn’t look like he would make it through the night. I was on the ward, my husband had stayed and, I think he was sleeping on the sofa somewhere, they found him somewhere to sleep so he was there which is good. I think, at that time I was very much like a zombie. I think because I didn’t know the outcome I didn’t let myself get too attached, sorry I’ll get a tissue.

No, no worries at all. 

This crazy after all this time.

* Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.
Jane had felt that while she was still carrying her daughter she was safe. So she was very worried about what would happen to her once she was born. “I think once she was born, she got handed over to the professionals 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.”

Baby being transferred

Parents had often been prepared that their baby would need to be taken swiftly off to be cared for either elsewhere in the hospital, or transferred to another hospital with a specialist unit. But parents said that even when the hospital had done their best to prepare them for what lay ahead, for example showing them around the neonatal intensive care (NICU)* ward, there was nothing that could really prepare them for their baby arriving. Jane said, “You just don’t know what it’s going to be like.”

Sally-Anne said that no one could have prepared her for the distress she felt at her son being taken away so quickly, even though she knew that was what needed to happen. “That was tough, that was hard.” Parents talked of their baby being “whisked away” or “handed over”. Amy said it was “heart-wrenching to have them somewhere where you’re not”.
 

Claire said she panicked when her husband told her the decision had been taken to transfer their son to the children’s hospital. She felt numb as he went past in an incubator.

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Age at interview: 34
Age at diagnosis: 33
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And so what happened to you immediately after the birth?

I just went through to recovery, you know, quite straightforward. I didn’t have any major complications other than I bled a lot. So I ended up, a few days later, having some blood transfusions. But so I waited in recovery. My husband went to the intensive care to, once they’d stabilised him, after about an hour, he went to the intensive care and I was by myself in recovery. And then he came back and said that they had made the decision to transfer him to the children’s hospital. Which I completely panicked about and, obviously, was very anxious about that. He was born about four o’clock in the afternoon and I think it was about eight or nine o’clock, they took him to the children’s hospital and they came past with him in the super incubator that they take in the ambulance just to show him to me again. And that was very difficult, very hard to see him with all wires and you could barely see there was a baby in there. And I, I did felt, I didn’t know what to do. They kind of said, “Here’s your son.” And I kind, I couldn’t move so I sort of said, “Okay.” And I didn’t really know how to react or what to feel. I just felt really completely numb. I didn’t, I couldn’t believe, process that that was my baby really.

Yeah

And then he went off to the children’s hospital and I was taken upstairs to the postnatal ward.

Yeah. Do you think that was, are you pleased they did that? Are you pleased you saw him on the way out or?

Yes. I think I am, in retrospect, and they took some photos that I was literally able to have right then so, when I went up to the ward, didn’t have him with me but at least I had some photos. So I am glad I saw him but, at the time, it was very difficult. 
Amy E’s daughter had gastroschisis. She was very unwell when she was born and was rushed to NICU. Although Amy E understood it was important for staff to stabilise her daughter, rather than talk to her, she still found it a shock. Amy wanted her husband to be able to go follow her daughter, but he was not allowed. This experience of a double separation was not unique. Rebekah described her daughter being taken to another city for surgery on her own (see ‘Transferring the care of mother and baby to a specialist hospital’). Emma was not able to follow her son immediately as she recovered from her caesarean operation. Sally-Anne was glad her partner could go with the baby but said it was really hard for him feeling torn in two directions between her and the baby.
 

Amy E was left thinking “what’s happened” while her daughter was rushed to NICU.

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Age at interview: 32
Age at diagnosis: 29
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But so it was, my final moments are of her coming in, which is what I wanted cos I was thinking oh no someone now believe me, someone believe me but yeah so I didn’t know until I read the discharge notes at this point that they had taken her off because her bowels were all outside obviously and I didn’t see any of that but they just took her straight off to assess the tear and they, they siloed* her, they had to like suck all of - she had so much bile in her tummy and they said to start off with the discharge letter it said that’s she’s like her heart rate was fine her breathings fine then it suddenly at four minutes old dropped to like 70 beats a minute so then they resuscitate her, I didn’t know any of this cos I was just lying there you know, just had a baby, good job that I didn’t know to be honest till I read the notes and when you read the notes after you’re like Christ. And they wrapped her up in cling film and they stabilised her and then in a blanket and I didn’t hold her or anything they literally went, this is what she looks like, we’re going. So I had, I saw her for a second literally a second, in the incubator, gone, and then I was left on my own again I was like okay what’s happened. 

But I, looking back, I understand why that was necessary because I would much prefer them to save her life than to stand and have to tell me what they’re doing cos I know that with my own job. And on the side-line actually which is quite a nice thing, when I was in labour the cancer ward is one below the birthing suite, and they and they come round and ask if you’ll donate you placenta for the stem cells cos they can’t afford to myself to save it for [daughter] so obviously said yes and they said to us, well ‘Because we’ve got all your scans her predicted weight is far higher than she should be as a Gastroschisis* baby at three weeks early,’ so she weighed 6lb 3oz, which is ridiculous she should have been 2lb and so obviously I said yes so then they came in and when I had the placenta they took the placenta off and they actually came back, I don’t know what the time frame was, cos there was no concept of it, they came back and said it was one of the highest grades they’d had and they were using it straight away on people already. So I felt really empowered I felt like I don’t even know if she’s, my baby’s alive at this point and she’s saving people already, that’s what I felt like.

* 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.

* 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.
Getting a cuddle - holding the baby 

Some parents were able to have a very quick cuddle with their baby before they were transferred, which they really appreciated. Michelle said that neonatal staff looked “vaguely horrified” when the midwife insisted that she have a cuddle with her son before he was taken through to NICU. Amy’s daughter had exomphalos* and was going to be transferred to another hospital. She wasn’t expecting a cuddle and so was “gobsmacked” when doctors brought her daughter over to her for a quick cuddle. Staff had covered up her tummy, so she didn’t look like she had a defect there, which made it all the harder to hand her back.
 

Michelle was promised a cuddle before her son was taken through to NICU

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Harry: We had a, she was one of those midwives that, I don’t know how long she’d, I think thirty plus years, no-one tells her what to do, they are the head of the unit. Mummy’s been promised a cuddle.

Michelle: At which they looked vaguely horrified cos obviously he’s there with his organs hanging out and I had been promised a cuddle so they kind of wrapped him up very quickly and I must have had about a three second cuddle.

Harry: Yeah, but what they did they.

Michelle: It was hard, you know he’s wrapped in cling film so.

Harry: Yes so they, they took him over to the corner.

Michelle: Cling film and a towel so I like, I didn’t see anything I could see his head.

Harry: And what they did they just wrapped the, his abdomen with cling film just from Tesco’s nothing, nothing particularly flash about it in order to obviously manage, manage the positioning as well as retain the heat. Quick cuddle and the rest of it and then out the doors.

Michelle: Straight through to the incubator.
 

Amy was able to cuddle her daughter, and wanted to be able to take her baby straight home, but sadly that wasn’t going to be the case.

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Age at interview: 39
Age at diagnosis: 33
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So did you see her when she was born?

I did, I did see her so but they’d, well, they’d whisked her over and put the surgical sarong, and they’d wrapped her up and then gave her to him. And I, we weren’t expecting it. We, we I was, I was gobsmacked that, you know, he’s holding her. He brought her over and I was like, “Oh my goodness.” She just looked like a baby. You couldn’t tell she had a defect. They’d covered it, you know. She just looked healthy and, you know and you’re just like “give her to me”. I want to take my healthy baby and sadly, that wasn’t going to be the case. And you know, you just think in that moment, ‘I want my baby with me’ and it’s heart wrenching to have them somewhere where you’re not. It’s not what you expect.

Although.

I knew it was going to happen. 

Yeah, yeah.

I was prepared. I was prepared.

Yeah, there’s only so much you can get your head round something.

Yes, yes, absolutely.
Barbara was given her daughter to cuddle before she was transferred to the children’s hospital. She was relieved to love her immediately and not be bothered by her defect.

“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.” Barbara
 

Amy said all she could see was her beautiful baby.

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Age at interview: 39
Age at diagnosis: 33
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I look at her and, and everybody saw the defect but I didn’t and one, a mum had said that to me before she was born, you know, all you’ll see is the exomphalos* at that first glance but after that, you’ll only see her beautiful face and she was so right. I only saw her face. I didn’t even see it after that and it was part of her. So saw the whole of her but she was gorgeous and I was, she was my baby and that, you know, and that instinct will kick in, you know, that you’re that baby’s parent and you will do everything you can for them. And to question decisions and, and, and the things that the medicals, our health professionals are saying to you that you can question. It’s okay to say, “Well, I’m not sure. What, can you tell me a little bit more about that?” It’s okay to say, you know, “Stop, that’s not the path. I don’t, you know, that’s not, tell me more about that decision and why you’ve chosen it.” So really you can ask questions and, and please do and I think another thing I would say too is to have some self-care.

* 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. 
Some mothers were not able to, either because the baby had to be taken away very quickly, or because they themselves were too unwell.

Being able to go and see the baby

Ally was allowed to hold her son briefly (who had gastroschisis) before he was taken up to NICU. She and her husband were allowed up to see him a few hours later, but not all parents were allowed to visit their baby immediately. Julie said she had to wait 5 hours or more to see her son, which she found very distressing. She felt the communication from hospital staff was poor.
 

Antonio was taken to the NICU to see where his son was being cared for, before being sent back to look after his wife.

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And, but at the same time the paediatrician came to the room and he said, “Who is the dad?” again and “I need to take you to the intensive care unit so do you know where your baby is?” and tried to explain, you know a little bit of the condition. That was the first diagnosis just within those ten minutes probably. So I went to the intensive care unit and I saw [son] with all the tubes and the only thing they told me whilst he has the meconium and this is a condition that requires to have him in an oscillator to help him getting rid of all the meconium that he swallowed. This is something that will normally take three to five days to recover. He will need to stay in the intensive care unit he will be fine. That was it. And he said, “We are going to let you know we’re taking additional studies or tests and we will let you know, as soon as we get more information. Your time is now with your wife and make sure that she recovers.” And then as I was coming by one of the nurses who’s from Spain, you know, I think he saw, he recognised my surname or was me speaking and he said, “Well don’t worry come here” and then he started to explain a little bit more about the condition he said that “Babies are very strong that they, they look very fragile. But they can recover very quickly and this meconium thing is something that happens very frequently” and he repeated the same things as the paediatrician, “You’re not going to leave home tonight but you will need to stay for a couple of days. But everything is going to be fine”. So again that gave me, those two conversations gave me more confidence about things that were happening so that I could focus on Alix. So I came back to Alix and I said everything is fine [son] is okay, well he didn’t have a name at that time I think. He is okay.
 

Hayley and Thomas’s son had exomphalos and they had planned their roles. Thomas was going to follow their son, while Hayley recovered.

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Thomas: So that was good, but when he came to, he was beaming, it was as if, as if he was ready for the world, he was looking, he was looking at me in that sort of way he was and he was trying to look at other stuff that was going around him in that sort of way, nothing else was moving but his eyes and stuff like that they’re all moving in that sort of way so that was a really, that was a really sort of special moment, a moment that it’s no joke when they say that the birth is the, is the best moment of your life and that was, in that respect it’s something that I’ve always treasured through everything that’s happened.

Yes, yes.

Thomas: So yeah and then that was, that was him so he was intubated and I stayed with him for about half an hour and that’s sort of were the doctors consultants and nurses in the neo-natal unit assured me that he was okay. Then I came down to see Hayley, Hayley was in the-

Hayley: Cos that was always our plan wasn’t it that you were gonna go with him because we’d watched the Small Wonders, Bliss DVD before we had [son] and we, we knew what our roles were then that he was always gonna go with him. I remember you at the door thinking what do I do, I was like [points] to the door.

Thomas: Yeah. You didn’t say that to me?

Hayley: No I did yeah.

Thomas: Yeah so, so yeah so they were really good up there and they said ‘Look’ no, it wasn’t at this point, I went down and got Hayley, Hayley had a chair and everything like that, and went up a little bit later on and they said to us he’s still doing really well but I’m just gonna leave him intubated but if he pulls that out then, then that’s it he’ll be, he’ll be fine to breathe on his own and then the rest of that night he was, he was, he’d a good night and everything like that.
Several people commented on seeing the baby with wires and tubes, and found them quite shocking at first (see ‘Bonding with the baby while in hospital for neonatal surgery’). 

Communication; updates and photos

Several parents felt that the communication in those early hours about how their baby was getting on was poor. Claire found the communication over the first couple of days while she was still in hospital and her son was in another hospital was the worst bit.

“Most of my contact was from [husband] and in the first two days that was ok because [son] was OK and on a surgical ward. But then when he went down to intensive care the communication there was not great, and that was the worst bit.” Claire
 

Sally-Anne was allowed to wave goodbye to her son when he was transferred. She felt she had to ‘badger’ the midwives to get news of how he was doing.

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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 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.
Some staff took photos and brought those to parents to show them where their baby was and what they looked like. This was really helpful to parents at such a distressing time, particularly if the mother wasn’t well enough to go and visit her baby immediately. 

Jane’s daughter was in NICU in the same hospital as her. “They took a photo of her…and that was very nice, very considerate of them….. I had to have these blood transfusions and also had to be sewn up and I was kind of stuck and couldn’t do anything, so that was very difficult.”

*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.

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.

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.

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. 
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