Parents’ experiences of neonatal surgery
Relationship with health professionals before and after neonatal surgery
Babies with surgical needs are often cared for by multi-disciplinary teams while in hospital. There was often a complex group of paediatricians, surgeons, neonatal nurses, physiotherapists, anaesthetists, from across different hospitals, for parents to get to know. The health professionals on duty would change each shift as well. Building these relationships was really important to parents, as these were the people caring for their sick baby, who could explain and update them on their child’s progress and (often) complex medical and surgical treatments. Good relationships with their baby’s team were key in helping the parents we talked to feel reassured that their baby was receiving the best care. Michelle and Harry’s whose baby was in neonatal intensive care with gastroschisis* said:
Michelle and Harry’s baby was in neonatal intensive care with gastroschisis. The relationships they built with staff were really important so they could be up to speed 24/7 about how their son was doing.
Michelle and Harry’s baby was in neonatal intensive care with gastroschisis. The relationships they built with staff were really important so they could be up to speed 24/7 about how their son was doing.
Michelle: You want to know what the plan is, so I always wanted to be there for ward rounds in the morning to make sure that you’ve met the night time nurse and spent a bit of time with them before you go home in the evenings so you knew what the plan was in the evening, you knew what the plan was during the day and that you could, you know, be around for all the stuff that you needed to be around for. And the good thing being they were always there 24/7 so even once you have gone home I used to ring up sometimes at 3:00 in the morning if I was pumping milk you get up and I’d ring from the other room just to see how he was. And, you know, has he done a poo yet has he done this how, is he settled that’s the bit we wanted to know.
Does someone pick up the phone and talk to you?
Michelle: They always, always pick up the phone, they would always say I’ll put you onto the nurse that’s looking after your baby or, you know, tell you what his temperature was tell you what his infection markers were, tell you, you know, how he was coping with whatever it was that he was dealing with at that stage as there were a few kind of ups and downs. So you knew you were only ever at the end of the phone from leaving, to be there, you know. So that was a huge comfort actually and to ring in the morning so you don’t have a terrifically stressful journey in, you know what to expect.
Harry: You get there at 9 ‘o’ clock or.
Michelle: 8 ‘o’ clock, you know what to expect when you get there for the rounds because you’ve already spoken to them you know what’s happening you’re informed you can either rush yourself out the door or be slightly more kind of take a breath before you leave, which is helpful actually really helpful.
Harry: Yeah.
Michelle: And because you’ve been there quite a long time you’re actually everyone pretty much had looked after him by the time we left, they all kind of knew, they knew you which makes a big difference. So you know, you certainly had your favourites, I had my favourites where you feel more or less confident leaving in the evening knowing that they were with such and such nurse that you had the upmost faith in. So yeah it makes, it makes a difference those relationships definitely.Joanne felt such a strong relationship of trust in her daughter’s consultant that ‘if he moved hospitals, we’d consider moving'.
Joanne felt such a strong relationship of trust in her daughter’s consultant that ‘if he moved hospitals, we’d consider moving'.
Midwives and doctors at diagnosis
Several parents described how they valued the support from specialist midwives shortly after their diagnostic scans and meetings with fetal medicine doctors. While all of a sudden their pregnancy had become very medical and frightening, the midwives who reassured and explained the condition to them were remembered as really supportive. They provided vital emotional support at a very distressing time. Alison said the midwife was “the shining light” and really tuned in to how they were feeling.
Amy E was shocked to be told her baby would need surgery, but the midwife who sat with her answered all her questions and was lovely.
Amy E was shocked to be told her baby would need surgery, but the midwife who sat with her answered all her questions and was lovely.
So she was lovely [midwife] was lovely and I still see her now.
Nurses in the special care, neonatal intensive care or high dependency wards where babies were being looked after before or after their surgery were often key figures. Parents spent long hours sitting next to their baby. They could build relationships with the nurses and really get to know them. In addition to caring for the baby they were vital in communicating between surgeons, doctors and parents, and in providing support to parents at a really stressful and frightening time. Parents really appreciated the manner of the nurses and doctors who were looking after their baby, which helped build a good relationship.
Rebekah explained how nurses were central to communication between parents and doctors.
Rebekah explained how nurses were central to communication between parents and doctors.
What was the nurse that communicated well like, what was, describe to me a good nurse?
The best nurse? Was [name], she was amazing. So she knew her job she explained things very clearly just the way she moved around a room, you know, she wasn’t mucking about so she would and she, so she would move, you know, very quickly she would be sorting this out boom, boom, boom, asking other people if she had nothing to do if they needed anything doing. If a baby was crying even if it wasn’t her baby she’d go over and see what was wrong with it, she would cut you off mid conversation to look after a baby cos that baby was more important than talking to me. She just was very efficient and yeah, you, she was amazing.
But also just good talking to you.
She just knew her job inside out, was, went into great detail explaining stuff very clearly, yeah very amazing lady, yeah.Hayley and Thomas were in hospital for several months with their son who had exomphalos. The nursing staff were amazing and could make or break your day.
Hayley and Thomas were in hospital for several months with their son who had exomphalos. The nursing staff were amazing and could make or break your day.
Hayley: Yeah which is, looking back now it’s ridiculous to think that.
Thomas: But it’s the impression that they gave you with them there and I think it’s a testament to the staff, how good they were, whether it be the doctors or the consultants or the, one of the nurses that just sort of, just reassured you all the time that it was, that it was gonna be alright. You don’t have any feelings that oh it’s gonna be this, that or the other, now they sort of reassure you that everything, it was okay from that, that period.
Hayley: At that moment yeah in that moment yeah. Yeah it’s a weird, a weird one.
Thomas: Yeah.
Hayley: But I think what, because we’d been there and it weirdly the, one of the nurses that showed us round or answered all my questions, I went with all these questions didn’t I?
Thomas: A book, a book full of questions.
Hayley: A book full of questions and she answered every single question and then when, I think it was the next day after [son] was born she happened to be on shift in the room.
Thomas: Yes.
Hayley: And you can’t, she didn’t look after [son] but you can’t imagine the way we felt that she, that we saw somebody that we knew, you know, she was just like, ‘I was wondering if it was you that we were waiting for,’ you know, just sort of.
Thomas: Yeah in two months, two months before we’d met her or something like that.
Hayley: Yeah and she just made you feel, feel, she was like ‘Oh I bet you’ve got more questions,’ and that yeah it just made you feel a bit better didn’t it?
She remembered you?
Hayley: She totally remembered yeah and that happened throughout the whole of his life.
Thomas: Yeah she did remember.
Hayley: People just always remembered us, if I went there on Wednesday and the sister was like ‘Hayley,’ you know, which makes you feel important doesn’t it.
Thomas: Yeah I think it makes you feel that not I nearly said important, that they cared, that they cared that you weren’t just a, a body so to speak.
Hayley: Yeah.
They remember
Thomas: Yeah.
Some parents were linked up with specialist nurses, e.g. a stoma nurse*, and really valued the extra support, counselling and advice they received. These specialist nurses often worked closely with the surgeon and were a lynchpin for parents in terms of organisation and information about their baby. They were also able to teach parents the special skills they needed to look after their baby, such as rectal wash outs and changing the stoma bag.
Mary found the conversation with the nurse very helpful in coming to terms with what a weird situation they found themselves in suddenly.
Mary found the conversation with the nurse very helpful in coming to terms with what a weird situation they found themselves in suddenly.
* Stoma
Surgeons may divide the bowel in an operation and bring the two ends out on to the tummy wall. This is usually a temporary situation to help the intestines or bowel rest and heal.
Faeces (poo) passes into a bag attached to the outside of the body.
In addition to the vital role they played in looking after their babies, several parents felt that the nurses were also looking out for them as well. Sally-Anne remembers that the nurses made her and her husband take a break sometimes. “They didn’t just look after son, they also looked after us and, you know, they could see when we was getting tired and things like that and they’d say, ‘Right, go home, he’s fine here…. you need to take a break yourself.’” Amy E described a nurse who stayed to support her when she was feeling at rock bottom after her daughter’s surgery. “I remember I just didn’t want to leave her and the nurse refused to go on her break, cos she said she had to stay with me…. That means a lot to me that you picked up how anxious I am and you want to stay to help me out.”
Zoe remembers the generosity and support she received from the nurses in NICU. They sent her off for meals, and would sit and chat with her in the long hours she spent at her baby’s cot side.
Zoe remembers the generosity and support she received from the nurses in NICU. They sent her off for meals, and would sit and chat with her in the long hours she spent at her baby’s cot side.
And were there things that the surgeons or the nurses did that or that didn’t stand out that you want to mention?
Their kindness and generosity and the fact that they actually supported us as well in a sense of you need to go home and eat that made the world of difference because initially we didn’t think we could ever leave her and that, that was important to us as well and the fact that when she was sleeping they’d just sit there and have a chat with us, doesn’t have to be about her, but just like general things about like deals on at the supermarket and things like that. And we obviously asked them quite a few times like, like babies with this how long do they have on average staying in NICU for in the hospital and things like that. And they always told us we can’t tell you because every baby’s different, but the fact that they were always honest about it that was the key thing, I mean, one nurse said that ‘Oh don’t expect to be out any time soon,’ we were like ‘Right okay,’ at that point she wasn’t doing bad, she wasn’t doing good just she was stable so she was kind of going on two months like we’d been told initially but so when we did find out about like oh yes she’s going home this week after just being in for just over three weeks at this point we were like yeah, yeah we don’t believe you, and that’s why we didn’t want to believe them until we were actually walking out the door with her and driving away so they couldn’t call us back.
But other than that, I think that was all, but the nurses were always there and they were always asking how are you doing it was never a time I didn’t walk in they said oh how are you doing today but I think the nurses made it possible like they were just amazing and the doctors as well like they were really good, they gave really good information they were there answering any questions and anything that asked them they were always really honest with their answers and honesty was probably the best and kind of got us through it because if they lied to us about something then we would have just been struggling to get on with it, like why is she not doing this, or, why is she not doing that or why is she getting treated different to what you said they were going to do and they, they didn’t take her off any medication too soon either. But other than that one incident with the pain relief everything was fine so, but that did annoy us and we told them that annoyed us and they apologised so it was alright, yeah.
* 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.Julie was in hospital a long time with her son. She built great friendships with the nurses, and wouldn’t have got through it without them.
Julie was in hospital a long time with her son. She built great friendships with the nurses, and wouldn’t have got through it without them.
* Paediatric Intensive Care Unit (PICU)
PICUs care for children and infants requiring high levels of care, in particular breathing support with a ventilator (breathing machine).
Different nursing styles
But some parents did find the different styles of nursing quite difficult to adjust to. Barbara found her first day in neonatal intensive care (NICU)* with her daughter difficult and stressful, as she felt the nurse was cold and unfriendly to her. The difference between her and the nurse next day was as “night and day”.
Barbara was relieved when she went in on her second morning that the night nurse had been cossetting her daughter and was lovely to her. It felt very different to the nurse who had been on duty the day before.
Barbara was relieved when she went in on her second morning that the night nurse had been cossetting her daughter and was lovely to her. It felt very different to the nurse who had been on duty the day before.
Alix and Antonio described how their experience on NICU could be dictated by the different ways that nurses on duty dealt with their son.
Alix and Antonio described how their experience on NICU could be dictated by the different ways that nurses on duty dealt with their son.
Antonio: Yes.
Alix: Some people would, some people would call him by his name some people call him baby or baby [surname] the odd time they even got his sex wrong and said she instead of a he [laughter] things like that. Some people would have, it was a sort of incubator were the lid came off like this and sides because the sides come down as well and some people would have the lid up but the sides still up, some people would have the lid up and the sides, actually no they didn’t really have the sides down did they, some would have the lid right up and they would have the lid laid down.
Antonio: Yes.
Alix: I think you could also, I think it had wee doors within the, within the side, there were so many different combinations of what you could do with it and everybody did it differently and that was what was hard to deal with because whenever you came in you came into the unit through the doors and it was one cot and then it was [son] down in the corner and whenever you went in, you kind or knew how you're day was going to go, if you saw the lid up you thought is it a good day we can sit there, rest on the edge, you know, just you can touch him or just see him or talk and know that he can he can hear us and we had books underneath you know we were reading to him all the time and then there’d be days you’d come in and the lid would be.
Antonio: Closed.
Alix: The top would be closed and you really couldn’t get, you really couldn’t get into him.
Was that because of his condition was poorer and that’s why it was closed?
Antonio: Not necessarily, so that was a constant, yeh.
Alix: Not necessarily it would be just people dealing with him in a different way. The first day he was there and the first nurse I think she ended up being my favourite because well she was the one who introduced us to everything and she had the lid up and she was yes and she was very positive and very caring and I felt very safe with [son] in her care then you’d have other people who would say you know have the lid down you know, he’s a very sicky baby, you know, we need to have.
Antonio: Don’t even remove the blanket that was on top of him because of the light. Or don’t touch him.
Alix: The light and things, his eyes, his eyes were closed and he was a full term baby, now I can understand a pre-term baby, you know, would be much more sensitive because they were awake and, you know, there are lights in the ceilings and, I don’t know just things like that, I just wish there was a bit more.
Antonio: Consistency across the care.
Nurses were at their baby’s side 24 hours a day, but surgeons visited only on ward rounds and were therefore harder for parents to see and talk to. Parents often felt frustrated that they missed talking to the surgeon, or had to wait long hours to speak to them, and then their time could be short. But Ally had a very positive experience, with the consultant overseeing her son’s care. “If you wanted to speak to them they made themselves available, I can’t fault them on that.”
Honesty was very important to many parents. When surgeons were honest with them that they didn’t know exactly how things were going to pan out it helped to build trust and a good relationship. Jane said her daughter’s surgeon “has that air that you really want surgeons to have, which is kind of quiet confidence and also never bull-shitters….. He has continued to be great and you know, I remember when my daughter finally had her operation, he just appeared out of the blue in his kind of weekend gear and he was like, ‘Oh I was just passing’.” Louise appreciated that the surgeon was willing to reassure her, saying “There’s always hope”, while her son was on HDU. Sometimes it was the little things which helped to develop a good relationship between parents and their baby’s surgeon; the time to talk, making a joke, making the extra effort to pop in at the weekend or stop them in the corridor to see how they were doing.
Claire appreciated that her son’s surgeon was clear and honest about what would happen next. She felt they were doing everything they could.
Claire appreciated that her son’s surgeon was clear and honest about what would happen next. She felt they were doing everything they could.
* Tracheostomy
An opening created at the front of the neck to allow a tube to be inserted into the windpipe (trachea) to help with breathing.
* 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. Julie had a difficult relationship with her surgeon for a while. It was always bad news, and she would hide when he came round. But now she has great respect for him.
Julie had a difficult relationship with her surgeon for a while. It was always bad news, and she would hide when he came round. But now she has great respect for him.
It was quite difficult to begin with cos obviously I found it, I found it very distressing the fact that they, they kept saying he was okay because of the fact they kept coming and saying he’s okay so carry on feeding him and I sort of was very bitter when [son] got pneumonia and everything at ten weeks because he aspirated because they kept feeding him even though, even a ‘Blind Freddy’ could see that he wasn’t tolerating it because he kept vomiting. Yes he did little bits of poo but, you know, even with a bowel blockage something could get through. So yeah it was really, it was really difficult and at one point we, they wanted to do a - is it fundo? Can remember, the fundoplication?
Funderplasty is that it?
It’s where they sort of block off the top of his stomach so he stops vomiting and the contents stay in his stomach. I can’t think of the proper name for it. We were like, you know, he’s not touching [son] it’s going to be done by a different surgeon and they got, they talked about it in like a meeting and then the other surgeon said, you know, you shouldn’t be doing it because, because [son], he only had one fifth of his diaphragm so the rest of it was made up of pig collagen, and his stomach was actually stuck to the patch so they said that it was suicidal for them to go in and mess with that because they would be messing with his patch as well. So it was decided that that wouldn’t go ahead and but from that point forward our relationship with him was quite strained until [son] had his second diaphragmatic hernia when he was two and they didn’t, they did a CT scan and they found that he had this, this bowel blockage they didn’t know it was his diaphragm. And so what was supposed to be a simple operation turned into six hours and then he came back and [son] had developed complications, he got an infection in his stomach and he kept dropping his blood pressure and all things like they just used to say that, you know, well they didn’t actually say that to me because every time a surgeon came on to the ward I used to go and hide in the quiet room. Cos I didn’t want to speak to him, I didn’t want to hear what he had to say to be honest. And then he went for another CT scan the week later and they saw that he had an infection in his belly and so they put in a drain in his belly that drained out all the puss and then they continued with the antibiotics and then that luckily made the difference and he started getting better.
And it was all about money because, because it was like [local city] got our funding in August 2007 but they actually didn’t do anything with it until April 2008 but that, you know, just another eight months out of our lives and what does that matter. So but when he yeah when he you know, made him better again it was like nothing really matters now, you know, he has made [son] better, we owe him everything sort of thing. So since then we’ve had a really good relationship with him, he’s still [son]’s surgeon and we still don’t deal with anybody else and [son] always went, [son]’s not that fond of him because they, because of the feeding tubes that he had as a baby he couldn’t have the one with balloons on so he had to go to a device where it could only be placed by a surgeon. And these tubes only last about six months if you’re lucky and [son] he’s got two so sort of twice a year he’d have to go and have these tubes changed by his surgeon and it’s painful cos you have to put a certain amount of pressure on and pull it hard and then it bleeds, and so [son] developed quite a phobia of it until last year they said because of how distressed that he gets and it was sort of like he’s getting stronger and bigger and it was taking like three people to pin him down just to change this tube. So they said they wanted to try the balloon ones again so we did last August and luckily it, he was, he’s been fine.Victoria described how health professionals became like a second family during her many weeks in hospital with her premature baby.
Victoria described how health professionals became like a second family during her many weeks in hospital with her premature baby.
*Neonatal Intensive Care (NICU)
A unit for critically ill newborn babies and infants who need the highest level of nursing and medical care. Babies in NICU often require support for their breathing. Those undergoing major surgery will often be looked after in a NICU.
* Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected.
*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.
Stoma
Surgeons may divide the bowel in an operation and bring the two ends out onto the tummy wall. This is usually a temporary situation to help the intestines or bowel rest and heal.
Faeces (poo) passes into a bag attached to the outside of the body. Stoma nurses provide specialist support for a baby with a stoma.
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.
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