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Parents’ experiences of neonatal surgery

Pregnancy after finding out something is wrong with the baby

Having a baby diagnosed with a condition that would need surgery had a major impact on the rest of pregnancy. Women we spoke to felt as though they were on a different pathway - it was like being “bumped off the normal course of pregnancy” (Claire)

There were parents who did try and enjoy their pregnancy and tried to make it as normal as possible.

I felt, I felt okay, at times obviously it crosses your mind and you worry and you think oh this is a big thing going on here we’re gonna have a poorly baby when he’s born. But again I still enjoyed being pregnant it didn’t take over which, which is surprising actually when I look back but basically I just focused on all I can do is look after myself and grow him and it’s, I’ve done my bit basically, that’s all I can do” Ally

When Amy’s friends held a baby shower for her, she said “it was the first and maybe the only time that it felt like a normal pregnancy”. She also made a point of asking for scan pictures and keeping them in an album, and asking staff not to tell her the sex of the baby so it would be a surprise.
 

Amy felt like a ‘mamma lion’ wanting to do the best for her baby, but wanted to feel she was having a normal pregnancy too.

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Age at interview: 39
Age at diagnosis: 33
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The first hospital, I’d met with the surgeons. We I have to say, I was, [laughs] I had a binder full of articles about exomphalos*. I mean I had research, research, research and I mean, when I went into interview the surgeon, I had written out a list of questions and one of the questions I asked was, “Have you seen a defect this big before?” Our baby had bowels, stomach and liver outside and the surgeon, “I saw it once before in my training.” And I have to say I just did not feel confident leaving that day and that’s when we started looking elsewhere and I felt like, my baby hadn’t been born. But I felt like mama lion and I felt like I, I was the advocate. I felt I was her advocate. I didn’t we didn’t know if it was a boy or girl actually. That was, we wanted one thing to be normal because nothing else was. We had scan after scan after scan, scanning for, and, and everything obviously focused on her exomphalos or we went to another hospital and she had scans for her heart because that’s obviously, associated in a lot of cases. And each time though I’d say, “Oh can I have a picture.” 

So I have this book full of pictures of scans that you know, a normal pregnancy wouldn’t have. So it was trying to kind of gleam any positive things we could out of this pregnancy because it wasn’t a positive thing. And somebody would say, “Congratulations” and then you’d tell them and they’d go, “Oh.” People just didn’t know what to say. 

* 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. 
Fiona and Mike, on the other hand, wanted to know the sex so they could look forward to having a little girl. 

Hayley said, “I actually enjoyed being pregnant…it was quite an easy pregnancy, apart from all the scans.” But many women said that they did not really enjoy the rest of their pregnancy. There were frequent visits to the hospital for scans of their baby, and they were closely monitored. They felt anxious about the baby inside them, and about the surgery he or she would need after birth. Some found it very hard carrying a baby they didn’t know would survive. Alison said she worried the whole time. “You just don’t really know what the outcomes going to be. You hope for the best and you hope that the operation’s going to be fine….it was a very worrying time for us.” Amy felt that her pregnancy became very medicalised, and as if her own needs as an expectant mother became “lost”.
 

Sally-Anne felt that the whole tone of her pregnancy became negative, she was always expecting the worst outcomes.

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The advice oh we wasn’t really given a lot of advice to be honest it was mainly the, it was just day to day and getting through the pregnancy. And that that was mainly, what they concentrated on. The last, I think about the last four weeks wasn’t it, no the last six weeks we was transferred then over to the fetal medicine department for weekly scans to make sure there was still blood going through the umbilical cord and things like that. But other to regards to [son] with his hernia it was mainly, you know, they’d told us about it but they never really went into any great detail and it was that bit wasn’t it where it was its yeah it’s hard to explain. It was like a, the terminate was that if we get him there then that’s great we’ve just got to get him there and that’s a lot of the time what we was told. See so when we was actually going through the pregnancy, you know, it was always me mum, you know, I’d go round to me mums ‘Have you had movements today?’ ‘Yeah I’ve had my movements,’ ‘That’s alright then’. And it was more of like a negative cos always expecting worse problems wasn’t it, you know, that there was gonna be a problem within the pregnancy you know, like I said I mean at 26 weeks I did have a show through I’d had a water infection. went to our local hospital and they was like, right, okay and I didn’t really know what to do other than started on the antibiotics but then, you know, I did like I said I mean I did start having contractions I was straight up to the fetal medicine team. And they’d got them all there ready but it was like we need to stop it cos you can’t deliver too early. we was told to expect a four and a half/five pound baby didn’t they cos they told us that [son] was very small you know, and they said that that doesn’t help matters. Luckily enough when [son] was born he was a lot bigger [laughter] but you know as I say everything it was all put down to a negative, there was not really, other than when they said that, that he’d got no other congenital abnormalities everything else was still a negative wasn’t it, you know, it was, I can’t turn round and say that whether it was me looking at it as a negative, you know, because I don’t know it’s hard to explain isn’t it. 
 

Louise said she felt her pregnancy wasn’t normal, she felt like a piece of meat being prodded the whole time.

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Age at interview: 32
Age at diagnosis: 26
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I don’t know if its normal in pregnancy you just end up feeling like a piece of meat, because you’re getting prodded and things all the time I wonder if they did rush me down, I think they were going to deliver me and they rushed me to the delivery suite because something was not right and they pumped me, and I had something in my arm and I had two things in, I thought they were going to deliver me, deliver me because I remember ringing my husband and saying they were rushing me down and he broke the car trying to get to the hospital but they didn’t. But at that point I felt so, I think exhausted and drained I just wanted to sleep and let them carry on. I don’t think I felt well at the end, they were monitoring my urine, I had protein in my urine or something as well it felt like I didn’t have any fight in me at that point because I was feeling so ill as well and I knew what was coming when they were actually going to be delivered. I was still hopeful I refused to believe that he wouldn’t make it I thought he has to make it.
Gathering as much information as possible was important to parents during their pregnancy. Amy needed to have as much information about her daughter’s exomphalos* as she could find, as it helped her cope.
 

Claire said that although they were confident in their local service, they went for a second opinion just so they could be sure they had gathered as much information as they could.

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Age at interview: 34
Age at diagnosis: 33
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So we had our next or sort of major appointments around twenty weeks, when we had a echocardiogram to look at the baby’s heart and they couldn’t get great scans. So they had a couple of tries and they couldn’t see anything significant but again, told us that, that doesn’t necessarily mean that there might not be other problems that they might not be able to spot. We felt like coming up to twenty four weeks was a big time in terms of knowing that we had all the information available to us. We felt very confident in the advice and the opinions we’d been given at our local service but we chose to have an independent private consultation I think just because we felt we were about to embark on such a difficult time that we weren’t sure what was going to happen. We just felt like once we got past twenty four weeks, we were really committed then, in a way. And so we travelled to London and had our second opinion, which kind of told us what we’d been told already, but it just felt like we’d done everything possible then.
Parents could find dealing with other people’s reactions hard during their pregnancy. Often family and friends didn’t know what to say and were unsure how to respond. Jane and her husband decided that writing a blog during their pregnancy was a way of updating people, helping them feel involved, without having to talk about it all the time (see ‘Communicating with friends and family when a baby needs neonatal surgery’).
 

Claire said she wanted to talk about it a lot, but found it hard to be around other pregnant women.

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Age at interview: 34
Age at diagnosis: 33
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Yes. I think people really didn’t know what to say because people always say, when you’re pregnant, you know, “As long as the baby is healthy.” 

And then, when the baby is not healthy or not in a conventional way, people are a bit unsure as to what to say or how to respond. And I, I think people cope with it in different ways. I didn’t have a problem with telling people about it. In fact, I probably talked about nothing else for a long time. But it just meant that I found it very hard to be around other people who were pregnant at the same time or to talk to them. Because they were nesting and buying things and, you know, going out for lunch and on maternity leave and I was in the hospital. So that was, that was very hard and I think some of the support groups that I found online were extremely helpful in that time because I think it can be very isolating, definitely. 
 

Shanise said she couldn’t get excited about buying things for the nursery and hated it if people wanted to touch her bump.

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Age at interview: 23
Age at diagnosis: 19
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No, didn’t enjoy it like. I think I’m normally the type of person who will block out my feelings for stuff like I won’t really deal with it it’s like I’m in a haze sort of thing. I didn’t enjoy my pregnancy one little bit and I don’t know if that was because of me if I was maternal shall we say or but it was, it was obviously the circumstances. When people came over and wanted to touch my belly I was like get off like, didn’t like that I didn’t like, I didn’t, I wasn’t excited like I didn’t even do [son]’s nursery cos I wasn’t that excited to bring him home cos I knew he hasn’t gonna come home for a while. [Partner]’s mum did the his nursery for me. I didn’t yeah just sort of like everyone talking about baby’s and stuff like that I would be like trying to change the subject like, everyone like, you know, giving me the sympathy or oh it will be alright yeah you’ll be fine sort of thing and I’d just brush it off, didn’t really deal with any emotions really I felt like a robot I felt like the robot throughout my whole pregnancy and throughout the whole hospital.
 

Amy said that while people ask ‘how’s the baby’, they don’t really know what to say if there is a problem.

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Age at interview: 39
Age at diagnosis: 33
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And I think my partner actually was a lot different. For him, he, I don’t know if he didn’t want to know or for him that was his way of coping, I’m not sure but, for me, I felt like I needed to be saturated with information and to expect anything. And I think that’s how I went into it when she was being born that she may not live and it was really hard. It was really hard when you were carrying a child that you didn’t know if they were going to live or die and it was hard to tell people, any people actually, you know, family. But more so people that you didn’t know as well because you felt like you were burdening them, in a way, with sadness. And I wanted it to be joyful. This was my first pregnancy and it was, it was tricky. Somebody held a baby shower for me and it was the first and maybe the only time that it felt like a normal pregnancy. It was a really special to me, that time, because it was the first time that I felt really normal and it was really, really special to me.
 

Sally-Anne felt people were offering her sympathy, when she really wanted to be treated like a normal pregnant woman.

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A lot of people knew purely and simply because [son] was not the only one the estate to have been born with an exomphalos*. I know two or, a fair few that have got exomphalos on the estate, unfortunately I wasn’t in contact with none of them even to this point now, you know, I’m not, you know, I’m not in contact with them. But, you know, people would say ‘Oh, you know, how’s things going?’ but they’d ask me because obviously they know and with it being quite a tight knit community as well word spreads fast. So, you know, it was, but it as more people give you the sympathy vote and I wasn’t after sympathy I wanted, I needed strength, you know, not people saying oh I’m really sorry, you know, I’ve heard, I’ve heard about, you know, the baby’s this that and the other and I’m like I don’t want your sorry's, you know, I don’t want that I want you to just treat me as you would do any other normal pregnant person because, you know, even then it was we’re gonna get through this we’re goanna do this. But then when you’ve got people saying things like that to you it’s like, you know, it’s how to react and you don’t always want to turn around and say ’I’m feeling really crap today, you know, I don’t want to talk about this,’ you know so there’s that side of it, so it had its positives, you know, positives but it also had its negatives. 

* 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. 
Support from family and their partners was very important in helping the women we spoke to get through their pregnancy. Sally-Anne drew strength from her partner and mum, although still felt she there were not enough support networks in the hospital for her. Although some relatives themselves found it hard and weren’t able to offer so much support. Louise said of her mum, “she worries about everything and she, she really had a hard time dealing with it.” It was also hard for parents to manage the expectations of family, particularly when there were older siblings, excited about the new arrival.
 

Joe described about how hard it was talking to her daughters about needing to be away after the birth, and preparing them for the possibility of their baby sister not making it home.

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Age at interview: 36
Age at diagnosis: 34
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But delivery day came we were all desperately concerned that [Name], what [Name] would be like afterwards, I was as any mum would be was worried that I wouldn’t get to see her or touch her or, you know, would she be breathing would she, would she even be alive would she, yeah so that was, ……that was incredibly traumatic the time before, the build up to the birth the last few weeks were definitely much worse of the pregnancy than the rest.

Because of the anticipation?

Yeah it was, it was the, you know, we had a toddler that we had to prepare for me being in hospital for quite a while, they had initially said about four weeks if all went to plan and we would bring [Name] home and her paint and wait was the idea before she was born. so yeah we had a toddler to prepare we had how old was [Name], she was ten and, we had a ten and a half year old to prepare for mum not being here for this period of time and travelling to and from the hospital we had to explain to the children about what [Name] would be like after she was born we weren’t sure whether [Name] was gonna survive after she was born so we had to have the conversation with our oldest child about, about possibly not bringing [Name] home. After we’d had this big old pregnancy they could see I was pregnant and were very excited about me being pregnant we did have to have the discussions about not necessarily having the baby in the house to look after. So that was really difficult with the, having already had to tell them about the other twins not surviving that was, that was really stressful so, because there was no definite outcome and there was no definite ‘This is what we’re planning this is what we’re planning on doing with [Name] afterwards, this is how long it will take,’ there was no plan until [Name] was born, when they could see her it was just we have to wait and see. Which as a family when you’re trying to plan life and childcare and emotionally prepare your other children and the rest of your family and friends is really tricky when you haven’t got any answers.
Mothers often found the anticipation and worry about their unborn child and what lay ahead very hard. They talked about never feeling able to relax, finding it “traumatic”, and “horrific”. Barbara said, “I was a wreck” and Louise felt “exhausted”. Ally was terribly worried through the rest of her pregnancy, but tried to focus on looking after herself as well as she could, as the best thing she could do for her son.
 

Barbara found getting through the rest of her pregnancy really tough. It was an incredibly difficult time.

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Age at interview: 44
Age at diagnosis: 38
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How was the rest of your pregnancy how did you find getting through?

It was pretty miserable I was I was quite unwell with these arrhythmia’s and normally what they would do would give you a beta blocker to just reduce your heart rate and make you feel better but the side effect of a beta blocker is that it can make the baby smaller so because we already had the concern about [daughter] I decided not to take that risk. So it meant I felt pretty awful almost all the time I mean I was a wreck and you know, people who met me, you know, how normally people go oh gosh you look wonderful you’re blooming, they would just go oh God you look terrible and I looked terrible, I felt terrible I didn’t particularly enjoy being pregnant the first time but it was a lot better than the second time. I spent a lot of time in bed and so I would work and then I would just come home, have some tea and go to bed and of course [older daughter] was six and a half by this time so it was hard on her because before I would have been all about her until she went to bed and I just didn’t have the energy and [husband] oh, he tries his best but he when he’s stressed he doesn’t really function very well and so he was getting into trouble with his boss and he was having to take on all this time off to come with me for scans and appointments and just being generally pre-occupied so his boss was giving him a hard time. And of course then we decided we were gonna move because we were in a flat and so we bought this place which was, needed everything done and of course we did all this before we knew about the problems that [daughter] had, looking into the house and it was really just an incredibly difficult time. And that’s how I remember making jokes about how its good she’s going into hospital because we don’t have a kitchen or a bathroom at home, she’s maybe gonna be better off in there. So yeah it wasn’t, it wasn’t great but we got through it.
Some women felt they were suppressing their feelings. Amy discovered that she needed counselling, others talked about how they just tried to battle through. Shanise said she “just put her feelings on hold”. 

Anna said she didn’t really feel she coped very well, but had to keep going.

*Footnote definition:

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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