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Parents’ experiences of neonatal surgery

Postnatal care for women when a baby needs neonatal surgery

Postnatal care is important for all women who give birth, but when the baby is being rushed away for surgery there is a risk that the woman’s own needs get a bit lost. Women we spoke to said that both they themselves and health professionals sometimes overlooked their postnatal care because the baby’s needs seemed more of a priority. 

Pamela recovered well from her caesarean operation, “which was just as well really because me and everyone else forgot that I’d had major surgery as well because all the focus was on the baby.”

Mothers unwell after birth

Many women we interviewed were quite unwell after they had given birth. Some had had caesareans as an emergency, particularly if their baby was being born prematurely. Others had a caesarean because doctors felt that was the safest way to deliver their baby. Trying to rest and recover after a caesarean was a challenge when they also wanted to see their baby in another part of the hospital or in another hospital some miles away.
 

Rebekah had a caesarean so couldn’t follow her daughter to the specialist hospital, where she was sent straight into surgery.

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So I was, I was fine yeah, you just can’t move cos you can’t feel your legs so I knew what to expect cos I’d had a caesarean twice before and obviously I was, I was worried about her but because I knew she was stable and I knew that it was something to do with her bowel I, you know, I kind of had a heads up already so it wasn’t a complete shock that it was happening cos something had been picked up on the scan. so yeah they just let me know that they would, you know, keeping in touch and let me know what was happening as soon as she got to [city name] which they did and to start with they were going to operate and send her straight into surgery but because she was so stable they didn’t actually do surgery until the next day.

Okay, okay.

But yeah I was, at that point I was, I was worried and I wondered what they were gonna find in the surgery because with her condition it can be really a lot more serious or serious but not so bad so we didn’t, yeah, that was probably the most anxious I was, just before they did that first surgery cos you know what you’re dealing with, as soon as they’ve done it you know what you’re dealing with. But I knew she was stable so that wasn’t a panic.
Several women also had other complications. Louise had pre-eclampsia*and Joe had a post-partum haemorrhage (severe bleeding) and needed to be looked after in intensive care herself for several days. Staff were able to bring her daughter to see her, which meant a lot as she was terribly worried her daughter wouldn’t survive her forthcoming surgery. Mary’s blood pressure was very high after her son was born. She was given medication, so she could be with her son while he was in neonatal intensive care (NICU)* as soon as possible.

Amy E was so focused on her daughter’s health (she had gastroschisis* and was due immediate surgery) she did not pay enough attention to her own. This was made worse by her postnatal care not being based in the hospital where her daughter was being looked after. She developed mastitis and didn’t pick up that her tailbone (coccyx) had been damaged during birth.
 

Amy E wasn’t really bothering to look after herself, and there was no one to look after her as she wasn’t at home but miles away in another hospital.

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Age at interview: 32
Age at diagnosis: 29
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Yes so I was becoming more and more ill I got fever and everything and we were both, I didn’t really know where to go. And because there was no-one to look after me, I’d been discharged from [specialist surgical centre]. I wasn’t at home and I certainly wasn’t going to go and sit in A&E for six hours when my daughter was fighting for her life in hospital because I didn’t want to leave her bedside so I just ignored it. Which is stupid because I should never have done that, should have gone, I should have asked someone and gone what do but no-one ever checked, there was no post-natal check for me. So now I know go because I spoke to my midwife the community midwife that she comes round the next day I didn’t know that so no-one ever checked how I was. And because I was, she was born on the Friday morning the breastfeeding midwife’s didn’t start until the Monday so I almost had three days of leaving them and then I think it might have even been Tuesday morning that I had the first lesson and by that point they were sore as anything. And me and my friend [name] who’s the baby’s mum next to me 

Yes so we had, there was a breastfeeding room there which is all the cow milking machines, expressing so we got a lesson how to do it every three hours to go in there and do it. But by that point I was already very, very sore and obviously I was sore down below as well and I hadn’t realised and I didn’t realise for about six months after I had her but in the delivery my tail bone had been completely fractured, I didn’t, it’s still fractured now but I didn’t know that had happened to me because I didn’t know what kind of pain I was supposed to be in, I remember feeling it go now when I think about it when I had her but, no-one else realised and I didn’t know cos I just thought that was the pain you’re supposed to be in, cos I had stitches. So and honestly now I’m now a new mum sitting on a hard office chair kind of thing in the neo-natal unit for 12 hours a day with a broken tail bone, stitches and an infection in both my boobs and down below [laughs]. and it got to the point I think, I can’t even remember what age she was, were I just felt so ill, sorry do you mind, felt so ill that my mum, obviously was like, what’s wrong, I said I feel so ill and so we managed to find some kind of clinic and I went and had to sit and wait and I remember waiting for about four hours to be seen. 
 
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Joe had a postpartum haemorrhage after her daughter was born and was in intensive care for several days. Staff were able to bring her daughter to see her.

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Age at interview: 36
Age at diagnosis: 34
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I was in intensive in the hospital yeah and that evening they brought [Name] up to me and my husband put her in my arms and I was so off my head on morphine I said ‘What’s that? What’s the heavy?’ because I couldn’t think of the word [laughs] and he said “It’s [Name] it’s your daughter it’s [Name] because I was desperate to call her [Name] everyone else wanted to call her [Name] but obviously with what happened [Partner] thought we’d better call her [Name] [laughter]. So he sent everyone a text saying yeah [Name]’s here she’s fit and well, Joe’s having a few problems but and I sort of opened one eye and said you can’t call her [Name] she’s clearly a [Name] [laughter] he said but I’ve told everyone well you’ll just have to tell everyone again [laughter]. But yeah I was so off my head on morphine I don’t really remember holding [Name] for the first time, I don’t really remember seeing [Name] for the first time. which as a parent when you were so desperately worried that your child wasn’t gonna make it to have those little precious moments not there now it’s a, and remembering her birth, the one overriding thing I remember was ‘Would someone please just take her away’ which is awful I feel terrible. Yeah I then they had to put a uterine balloon inside to stop the bleeding so the next day I had to go back down to theatre to have that taken out. So I didn’t, and then I went to the, back to the delivery ward so I could have one more care so they could look after me and the nurses from special care kept bringing [Name] over for every sort of few hours for ten minutes to come and see me but I don’t, again I was so, on so many painkillers I don’t really remember seeing [Name] or, I have fleeting memories of looking at her and, you know, when newborns do that cross eyed thing and they can’t focus and I remember saying to one of my friends there’s something wrong with [Name] because she can’t see properly, forgetting in my morphine induced that, that’s what babies do they can’t focus. 

Yeah eventually I went back to the post-natal ward and I was put in a room thankfully with other mums that didn’t have babies with them, whose other babies were on special care. So the nurses were lovely they were really understanding because I mean on the ward you can still hear all the other babies crying was, it was awful at night-time, you know when your baby was in special care and these other mummies got to have their babies beside them and because I was so big and swollen from all the fluids that they put inside me I couldn’t walk so every time I wanted to go and see [Name] in special care I had to ask someone to take me which on a very busy ward isn’t convenient for other people so I had to rely on visitors a lot, my husband to come and take me to see [Name] in special care. 
Postnatal wards

It was a terribly worrying time as mothers were desperate to see and be with their baby. They had often not even been able to hold them before they were whisked away. This was made worse for some women because they were put on postnatal wards with other mothers and babies. Amy said the first night was “so painful” and hard. Her daughter had been taken to another hospital for surgery, while she was on a ward with mothers and their crying newborns.
 

Amy E said it was one of the low points of her experience, to be put on a ward with mothers and their babies, and she had no baby.

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Age at interview: 32
Age at diagnosis: 29
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I still didn’t know how she was, I got sent to the post-natal ward this is probably one of my lower points I was just put in a bed on a ward with people, all babies and I had no baby. I can’t even, until that happens to you can’t, people look at you and then people think oh what, oh poor woman what’s happened to her and you’re obviously upset. And I’m like how is she can they like, we can’t tell you we don’t know, we don’t know and I was just left there and the woman next to me her baby was crying and she couldn’t feed her or something and I just remember hating her absolutely hating her and I asked to go in my own room and they said we haven’t got any and I did get moved after the first day, to my own room which I needed because I was going absolutely mad there. But I sent everyone home then because people had been there for since the Wednesday so I sent [husband] and my mum home.
But some hospitals were very sensitive to these concerns and made sure that these new mothers who had been separated from their babies were given privacy to recover. Jane said the hospital found her a little corner to be private which she really appreciated. “But they put me in a room on my own, it was, I didn’t pay for a private room. They just found me a little corner which was brilliant and. I just, I remember I just, there were, you know, my husband, I went down to see her with my husband and gave her a cuddle and breastfed her.” When Joe left intensive care and went back to the post-natal ward she was put in a room with other mums who didn’t have their babies with them because they were in special care. She really appreciated this. “The nurses were lovely, they were really understanding.” Shanise was wheeled into the NICU in the middle of the night to see her newly born son. She appreciated this but felt out of place, as she was on a bed and “just felt like I was intruding on these premature babies”

Mothers discharging themselves

Many mothers we spoke to were so desperate to follow their baby that they discharged themselves from hospital as quickly as they could. Sally-Anne threatened to discharge herself unless staff discharged her after three days. Even though Amy was still recovering from a caesarean and had high blood pressure, she discharged herself for a few hours, so she could go and be with her daughter.
 

Amy said even if you have to write in my notes, not agreeing with medical opinion, I’m going.

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Age at interview: 39
Age at diagnosis: 33
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When she was born, it was quick and the anaesthetist came over and said, you know, “How are you?” I said, “Please just tell me what it is.” [Laughs]. I think they all probably suspected I knew along. Obviously, they had done lots of tests along the way and everybody knew I’d had a CVS. So they knew a hundred per cent what it was but we had never asked. We wanted to have something, something that was special to us and it actually was in the moment and she came out screaming and I think, I don’t know if nobody expected that. They wrapped her in a surgical serang wrap and in a blanket and dad got to hold her and we weren’t expecting it, you know. To me, it was just she’s coming, she’s being whisked away. That first night was so painful. It was so hard. One of the things that I wished the hospital had done differently is that they put me in a unit with nine other women, who all had their babies with them, and I found it so painful. Do you know, she was safe when she was in me and there she was whisked away to another hospital to be treated and was having surgery that night and I’m in a room not being able to sleep because these babies are crying, which is great, you know, for the other mothers but for me it was so painful.

I really thought there was some other way they could have, I don’t know if there was another room or something. It was just such a painful night and I was in there two nights and both were like that. And this I found it, I don’t know if, I don’t know if people weren’t used to having people whose children were whisked away. But the nursing staff, I’d say, you know, “I’d like to call to the hospital and see how my baby is, you know. She’s just had surgery.” And they were saying, “Oh, oh well, not now. In.” You know, you can imagine, I was getting really upset and, you know, I needed to hear how she was and finally one of them went and called, and let me know that she was doing okay. I needed to know that. I needed to have that reassurance. 

The next day I wanted to go and see her and the doctor had said, “No, you know, you’ve just had this c-section and your blood pressure is high.” And I said, “My blood pressure is high because my baby is in another hospital and I’m not with her.” I said, “I’m going to see her.” I said, “Even if you have to write in my notes, mother is, you know, not agreeing with medical opinion, I’m going. I’m going.” So we reached an agreement that I would go for an hour and so my partner and I went over to the hospital and I got to see her for an hour and it was just, it was so emotional seeing her for that first time, with all of the machinery and, you know, she had the silo* on and you know. So she’d had this first surgery and she just looked so helpless. And I felt helpless and I, you know, there was nothing I could do and I just, I was I was shocked, even though I’d seen, you know, thousands of pictures and I was, you know, this is what your baby will look like and I had a tour of the hospital ICU unit. 

* 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.
Mary had a very positive experience. Her obstetrician appreciated that although she was still recovering from delivery and had high blood pressure, her priority was to be with her son. So she arranged for her postnatal care to be transferred to the hospital where her son was now being cared for and made a point of phoning through details of the pregnancy and birth, which Mary really appreciated. She had a follow-up appointment at six weeks to go through all the details of the birth, which was very helpful.
 

Mary was supported in her discharge so she could be with her son who had been transferred to another hospital.

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Age at interview: 42
Age at diagnosis: 41
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That wasn’t even something I’d thought of so when he, I had a C Section on the Sunday and I think normally after a C Section you’ll normally be in hospital for three poor four days, also I was quite ill after the C Section so I was quite ill on the Monday and Tuesday and was kind of getting there on the Wednesday morning and my obstetrician kindly said look with [son] having been transferred to [teaching hospital] on the Tuesday evening, she said, ‘Show them you can kind of get up have a shower and provided you get taxi’s to and from the hospital every day and, you know, you’re not lifting or doing anything too taxing,’ she said ‘I’m willing to discharge you because I know you need to be with your baby,’ Which was a good thing for her, you know, very, you know sensible and kind thing for her to do. But I obviously needed to have the postnatal checks and they were quite important as my blood pressure was proving quite problematic. So she said I think it was the obstetricians initiative but the midwives I think organised it that I she said, ‘You’re not going to be able to be at home for the midwives to come and do the normal postnatal checks at home’ so they arranged with the [teaching hospital] that I could go into their maternity unit and have the postnatal check done with their midwives. 
*Footnote definitions:

Pre-eclampsia is a condition where women develop high blood pressure, fluid retention (oedema or swelling) and protein in their urine. While mild pre-eclampsia can be monitored with blood pressure and urine tests at regular antenatal appointments or by the GP, more serious cases need to be monitored in the hospital. Treatment focuses on lowering blood pressure but the only way to cure pre-eclampsia, if it is severe, is to deliver the baby. If it is not treated pre-eclampsia can lead to serious complications. 

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.
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