Parents’ experiences of neonatal surgery

Reaching the day of surgery was in some ways a relief for parents who had been waiting for this moment, but also really difficult and emotional. There was the preparation their baby needed ahead of the operation, the handing them over to the surgeons and then the agonising waiting, often for hours and hours. Fiona said she could barely remember much about the day itself. “That’s part of the trauma of the situation, your mind starts to anaesthetise bits, and you just can’t remember it.” Yet for others every detail seemed to be vividly imprinted on their memory.

Before transfer

The immediate hours and minutes before surgery could be distressing for parents. Their baby was often hungry and grumpy, as they had to be starved before the operation. Sonya and Adam and Barbara described how “hideous” it was trying to comfort their babies. Consent forms needed to be signed (see ‘Preparing for neonatal surgery’). One mum described how she took some photos to remember their baby before any scars. “I wanted a photo of what [Name] looked like without any scars…. looking like she had done, like we’d known her for five weeks to look.”Joe

Getting transferred

Babies that are being cared for in neonatal intensive care (NICU)* will usually need to transferred into a special shuttle transporter to take them to the surgical theatre. This can be complicated and take a long time. Pamela said it was quite a trauma getting her son ready in the shuttle that would take him from his incubator to the surgery. Saying goodbye to him was very hard, “thinking will we ever see him again”. Michelle said, “You will never do anything scarier than walking down behind that incubator, I don’t think”.

Saying goodbye at the door of surgery

Parents had different experiences of whether they were allowed to, or wished to, accompany their baby through to surgery. Some were allowed to stay with their baby while the anaesthetist put them to sleep. Michelle and Harry walked down with their son to the pre-op room before he was taken through to the operating theatre. “The anaesthetist, he was great actually, he talked us through what he was doing.”. But others were asked to hand over their baby earlier and they had different reactions. Victoria found it really hard handing her son over to the surgical team, she was so frightened she “couldn’t bear to walk down with him”. Donna and Matt handed their son over at the door of the operating theatre, as the team were not quite ready for him when they got there. She remembers being in floods of tears outside the operating theatre after her son had gone in. One of the doctors walked past and was very reassuring.

“So we didn’t, we weren’t actually with him when he went, got put to sleep, which I don’t know whether that’s a good thing or a bad thing. But I just remember sort of I was stood in floods of tears outside theatre and one of the doctors walked past that we’d sort of seen and he was like ‘He’ll be alright, he’ll be alright’ and I remember sort of just nodding as I was sobbing.” Donna

Adam and Sonya felt that it was a shame that only one of them was allowed to go in there with daughter as she went through for the anaesthetic.

Adam and Sonya felt that it was a shame that only one of them was allowed to go in there with daughter as she went through for the anaesthetic.

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Adam: This is really my only complaint about the whole, not just this sort of - I don’t blame the staff because they were all excellent but the way everything worked was that only one of us could go in with her.

Sonya: Yeah.

Adam: Which I can understand it overnight to an extent although it was a bit annoying but it seemed crazy to me that only one of us was allowed.

Sonya: Yeah so I went with her and went into I don’t know what, like the rooms called not, obviously not the theatre but.

Adam: It’s also I think they called it the recovery room because it’s where she goes afterwards as well.

Sonya: No it was a different room.

Adam: Oh was it?

Sonya: Where she went afterwards from where I picked her up from.

Adam: I walked to the door anyway and said goodbye.

Sonya: When I went in and I although I basically just had to hand her over I didn’t stay until she was asleep.

Okay.

Sonya: So I just gave her a kiss and handed her over. And the anesthetist then was very nice as well and he said oh, I can’t remember his exact words but basically put his hand on my arm and said, ‘You know we’ll look after her,’ which was lovely, made me cry again [laughs]. And then we left and we had they said it would be about half an hour, the surgery was 20 minutes tops but by the time they got her to sleep and gave her a bit of coming round time it would be about half an hour which was probably the longest half an hour ever.

Adam: Yeah but it’s also the different experience because you went into that room and although you didn’t stay for the whole point in you handing her over there are a lot of people in that room, there was a lot of medical equipment it suddenly, I think for you it was quite intimidating for somebody like, actually this is a big deal, you know, she’s actually having surgery here. All these people checking her vital signs and things like that and it seems like a big emergency procedure which I think is hard, it was hard for you. Yes at the same time I didn’t have that, she disappeared through a door and then I think - I don’t know which was better or worse in the end but I think both would have been better if we could have been together I think that’s the difference say it, yeah.

Angie and Luke had request specifically that they would allowed to stay with their son until he was asleep, and so were distraught when told they would have to hand him over at the door.

Angie and Luke had request specifically that they would allowed to stay with their son until he was asleep, and so were distraught when told they would have to hand him over at the door.

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Luke: So you’ve got to have someone else there who can sit with and it’s just awful. Anyway so we get to the stage where we’re ready to go down for anaesthetic go into this room. 

Angie: The anaesthetist came and had a consultation with us.

Luke: So we went into this room didn’t we with him?

Angie: No, no that was later, she came, the anaesthetist came round to talk us through the anaesthetic and we said yeah and we’d really, you know, we’d obviously like to take him into the anaesthetic room and give him the anaesthetic while we hold, you know, we... I think what we said was ‘Obviously we’re coming in to the anaesthetic room. Will we be able to hold him while he’s anesthetised or will he have to be on a bed, we’d prefer to be able to hold him?’ And so, ‘You won’t be able to come into the anaesthetic room,’ and I said, ‘Well we specifically asked to do that and it’s really important.’

Luke: There’s a group of four people and this was about half an hour, fifteen minutes before he’s due his op.

Angie: That’s when we went down to the little room. She had this consultation with us and told us we couldn’t do that and we said, you know, and she was in quite a hurry. So she sort of said that - and I remember I said, ‘Well it’s, you know, it’s really important for him - we don’t want him to go, we don’t want him to go under feeling abandoned and stressed and alone,’ and you know, and she said, ‘Well if you want…’, I think I said, ‘I want him to go under happy’, you know, and she said, ‘Well I want him to go under safe and I can’t do that if I’ve got to be flapping about - worrying about parents’. So that was her parting shot and then when we took him down we said…

Luke: We said look it’s really important, and because I mean there’s been, there’s been actually quite a lot of studies on this and actually the stress levels that children feel and their body’s experience during operation is directly affected by their mood when they are anesthetised and the same with adults, it happens in the same way. And so there’s really solid research there and from children of I think two years old or so they accept completely that’s a need.

Angie: She said a year, she said, ‘Oh well we do it with children over a year, but he’s a baby he won’t, and he won’t understand the difference’.

Luke: So we went into this room with kind of, at this stage four of them and so.

Angie: In this sort of waiting room outside the theatre it’s all decorated it’s got sofas and, you know, and all the rest of it and it’s beautifully decorated ready for, you know, for you to wait for your babies operation and all the rest of it, so we’d taken him in and…

Luke: And they just said basically ‘Yes we’re not prepared for you to do that. Would you like us to cancel his operation, I mean it would take some time to reschedule, but if you want to reschedule at a later point, but no you’re not allowed to come in. Do you want us to put off his life saving operation knowing that there is a risk to his life by doing so?’ 

Angie: So yeah they basically - and you said to them, you said, ‘Well you’ve got us over a barrel haven’t you’, you know. ‘We’re obviously not able to do that and you’ve taken away all our choice and all our, you know, all our ability to parent him you just’, and they took him screaming, you know, he was screaming, you know, he obviously, he was distressed, you know, he’d been nil by mouth for some time.

Waiting

Waiting during their baby’s surgery was one of the hardest parts of the whole experience for many parents. They had often been prepared for a wait of several hours – Leanne was even told it could be 24 hours. Parents had different ways of passing the hours. Many left the hospital to try and pass the time more quickly. Leanne went for a long lunch, Adam and Sonya went for a walk around the hospital grounds. Victoria went to a nearby shopping centre, “we couldn’t bear to sit at the hospital waiting, you can’t, it’s awful cos you just, you’re just sitting and waiting.”

Joanne phoned her parents and then went and sat in the chapel.

Joanne phoned her parents and then went and sat in the chapel.

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Age at interview: 41

Age at diagnosis: 34

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But at the time I think I‘d taken her in and you know, at least at that age they’re not really aware of what’s happening and obviously subsequent surgeries, you know, when you’re trying to help them accept the mask and all those sorts of things. But yes so once she was in we’d got into a pattern of sort of going to the chaplaincy in the hospital because it’s quite a sort of private space and there’s a little room where you can light candles which is quite nice considering, we’ve always thought that was quite nice considering, you know, it’s a fire risk and quite easily say no you’re not doing it and, you know, whatever, that they do allow it in there and so yes we would usually sit, you know, we’d usually phone the parents whatever say she’s gone in blah, blah, blah and go there sit there for a while, you know, and obviously you might need to go and get a cup a tea and stuff and the ward have got your number but you didn’t always get a great phone reception in parts of the hospital so you have to kind of, there’s a bit of you that’s a bit anxious that you need to stay near enough that you can be contacted if you need to be. 

Some operations were shorter than expected. Zoe had planned to walk around the local gardens, but by the time she had had a shower, her daughter was back up out of surgery. Waiting for news was agonising and exhausting, even when the operation was quite short. Adam and Sonya said it was “the longest half an hour ever”. Rebekah’s daughter needed to be transferred to a separate hospital for her operation. She was furious that although someone called her to let her know her daughter was out of surgery, it was several hours before she was called again to let her know everything was OK.

Rebekah was furious because a miscommunication meant that she waited hours after her daughter’s surgery to be reassured she was OK.

Rebekah was furious because a miscommunication meant that she waited hours after her daughter’s surgery to be reassured she was OK.

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So someone did ring me and tell me she’s out of surgery. She’s fine it went well, we’ll be going back to the hospital. Because the surgery’s done at a separate hospital to the one she was in and once she’s back we’ll let you know and you can come and see her because she might be ventilated, you know, she sort of needs to come round and is, you know, there’s, you know, if you’re not there there’s nothing you can do, I knew she was okay. So I went, sort of walked round [city name] shopping just mooching around, it was summer so it was quite nice to just go and walk around. And it got to 7 ‘o’ clock that night and I’d actually, I was in the hospital lobby when I saw her being wheeled through the unit, and I thought right she’s back they’re gonna phone me soon, you know, let me know what’s happening and it got to 7 ‘o’ clock that evening and I still hadn’t had a phone call. So you’re thinking right is there something wrong, you know, surely they’re going to be in touch and in the end I phoned them and she was back and she’d been fine it was just miscommunication and no-one had phoned me. So by then it was nurses change over so I still couldn’t go up there because they didn’t like parents in there, in the rooms when they were doing the nurses change overs and then it was doctors change over. So by now it’s like I don’t know half past 8 at night and by that stage I was so furious because there’d been miscommunication and is my daughter dying? Is she fine? Is there something complicated going on? But just hadn’t heard from anybody. 

So I rang my mum and just asked her if she’d completely blast them out cos I was so pissed off and she did she rang them to ask what was going on and they said they were really sorry and I said that’s not good enough I’m really hacked off. And so I went up eventually and unfortunately the nurse looking after her wasn’t, was foreign which is absolutely fine I have nothing against foreigners but when you need to ask someone about surgical procedures or what might have happened, communication is so vital so when you’re speaking in broken English to someone it’s really difficult to know what’s going on. So that was all a little bit stressful yeah I was not happy about the situation after she came out of surgery.

Amy E described the 8 hours her daughter was in surgery as the worst hours of her life. Seeing the surgeon afterwards was very reassuring.

Amy E described the 8 hours her daughter was in surgery as the worst hours of her life. Seeing the surgeon afterwards was very reassuring.

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Age at interview: 32

Age at diagnosis: 29

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Next morning she was prepped for surgery and I was allowed to take [husband], my husband does not want to see anything happen to her, if they took blood from her if they put a long line in here he did not wanna see it but I wanted to be there and hold her hand so that I knew at least that I knew she was alright. So I wheeled her to the operating theatre then I wasn’t allowed in. And then it was the worst day for about, I think it was eight, eight and a half hours, the worst eight and a half hours of my life cos I just did not know what was going on, no-one could tell you, you can’t, you can’t say, phone the surgeon and ask him what’s going on, can you ask him how it’s going, you know, he’s in the middle of the operating there so those eight and a half hours I was, I couldn’t speak, but I couldn’t not speak, I couldn’t walk around, I couldn’t sit still, I couldn’t eat, but I was hungry - it was just a really odd sensation. 

And I remember even my dad who likes to fix everything he, there was nothing he could do to make me feel better and at one point he said to me ‘I’ve decided I’m gonna give you some money,’ and I was like ‘What?’ And now he denies saying it and I said afterwards where’s this money come from and he was like what money I said you told me that you’d give me some money, cos we were all so fraught that he was just trying to, in his head obviously he’s trying to think what, can I do to make her feel even a little bit better. Cos my mum and dad said to me have, it was horrific for me and [husband] obviously but for them they were not only seeing their granddaughter but their daughter have to go through it and they were like, they, and they could do nothing to make it better. But when she finally came back from the operating theatre I just saw her tummy was closed and I was just, I think I dropped to the floor actually, I looked like an absolute loon in the reception area and everyone was just looking at me and I was just crying cos I just thought cos her tummy was closed cos that, they were saying oh we might have to stich a bag on to her tummy. And so then the surgeon took us to one side and he said, ‘Look I’ve managed to do the best, the best case cos I’ve managed to kind of spray her bowel and funnel it down,’ he said, ‘I’m not promising that it’s gonna be a magical cure but I’ve not done it before, but it worked. I’ve had a look at her bowels her bowels were a nice pink colour and so they’ve actually worked and I’ve put them back in’. And she was ventilated and you can see from her photos like her tummy was up here even like squashed up, cos she was ventilated cos all of her bowel was really pushed in.

The uncertainty was agonising for parents, and for grandparents, as Amy E mentions, “we were all so fraught.” 

There was huge relief when they finally got the call their baby was out of theatre. “I remember it so vividly, they just appeared at the door and you’re kind of looking and scouring their faces to try and see has it done well, has it not gone well?” Michelle 

Some parents were able to see the surgeon immediately after surgery and get news of how the operation had gone. (as Amy E was able to do, see above). Zoe’s daughter had surgery for her gastroschisis*. The surgeon was on the ward quite shortly afterwards, and was “delighted with the way it went, because it was all in one go, they didn’t have to do a partial closure, it was a full closure, he was really, really pleased with it.”

Victoria’s son had surgery for post-NEC scarring. The surgeon told her the operation had gone really well.

Victoria’s son had surgery for post-NEC scarring. The surgeon told her the operation had gone really well.

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Age at interview: 31

Age at diagnosis: 31

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We did actually yeah but we did they actually came, we literally, we’d literally were just walking off the unit and I got to, she doubled back one of the surgeons doubled back and come to get me and said, ‘It’s gone really, really well and, you know, we managed not to have the stoma, we’re all really happy about that’ and, you know, they, they were amazing, they were to be fair they came up, up to see Bobby every day and you know that wasn’t just kind of the, that was the people, the top, top surgeons that had Bobby, yeah they were good they came to see Bobby every day they, they included us, they spoke to us they asked us if we were worried about anything you know, cos we know Bobby, you know, we know his little ticks and, you know, yeah they were very good you know, really.

Vanessa’s son had surgery for a bowel condition called Hirschsprung’s disease*. She and her husband took themselves for a walk, and then went back to the hospital. She said the last bit of waiting was the hardest, as they waited for the result from pathology tests. Finally they were able to go and get him – “he was all like grey and, you know, he looked like he’d been in an operation all day, bless him”. 

*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.

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.

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. Victoria’s son had scar tissue left over from a NEC infection that needed to be removed.

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 normally.