A-Z

Amy E

Age at interview: 32
Age at diagnosis: 29
Brief Outline: Amy was expecting her first child when her 12 week scan picked up that her daughter had gastroschisis*. She was born at 37 weeks and needed two operations. She is now three and doing well.
Background: Amy is a police officer. She is married with one daughter, expecting a son.

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Amy was expecting her first child. She had a feeling that things were not right, and her suspicions were confirmed at the 12 week scan that showed her baby had gastroschisis*. She was referred to the hospital with a specialist paediatric surgical team closest to her, but it was a two-hour journey away. She had a stressful pregnancy with regular scans.

At 37 weeks doctors decided it was time to deliver her baby, and she was induced. Her daughter was born and taken immediately to the neonatal intensive care unit (NICU)* for assessment. The surgeon soon came to tell Amy that her daughter’s condition was worse than they had feared and she required immediate surgery to widen the hole in her abdomen to allow her organs to move back into her body. She was only a few hours old. This first surgery was a success, and Amy’s daughter was returned to NICU. But she was still very poorly, unable to feed properly and on total parenteral nutrition (TPN)*, for several weeks. When she was a week old she had another setback and needed further surgery. Amy said the consultant surgeon flew back from South Africa to operate on her daughter, and tried an experimental procedure which was successful. Amy’s baby started to make progress and was able to start having milk when she was about 4 weeks old. But progress was slow and it was another 5 weeks until she was able to go home. Amy was able to stay in hospital accommodation, as it was a long journey from home. 

Amy’s daughter progressed from NICU, to high dependency and finally to the special care ward. At 6 weeks old doctors felt that she was well enough to be discharged. Although Amy still takes her for regular check-ups, her daughter is doing very well. She was 3 years old at the time of the interview and due to start school in a few months.

*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.

* 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.

*(Total) Parenteral Nutrition (TPN)
TPN is nutrition is delivered directly to the blood via a vein.
 

Amy E found the tour of NICU* really helpful. She was able to speak to the staff and it took away some of the scariness of it all.

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They, what did they- one of the good things they did is they offer you a tour of your neo-natal unit if they know you’re gonna be in there, which obviously they can’t do for everyone so we did have a tour of that. And that helped me because the first time I walked in it wasn’t the first time I walked in there it was I’d already been in and looked round, it really upset me when I walked in there and looked round when I was pregnant. But there was another baby with Gastroschisis* in there who was a really simple case so I was really hoping that we would be like that but we weren’t. so, and just to see the rooms and see how they work and speak to the staff and the staff spoke to me and said you know, like we have the ward rounds, you can’t be in here for the ward rounds you have to leave and all things, just pace, that was really good and I think they should definitely carry on with that because if you can just seeing it first takes away some of the scariness of it. 

And also we met the consultant surgeon Dr [surgeon] who’s did her actual surgery the second lot of surgery beforehand and he basically sat just sat and told us how it was, very matter of fact about it but that’s what I needed, I needed someone to say this is what’s going to happen, this is what will hope if this happens.

*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.
 

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

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So it was quite horrific the whole pregnancy because every time I went for a scan or a consultant they just, all they could say to you was, ‘We just have to wait, have to wait we can’t really tell much till, till we get to the point of having her.’ And she, they said to me oh ‘We’re interested in the stuff on the outside and the stuff on the inside because if it gets, it starts getting swollen up on the inside it’s dangerous on the outside it’s dangerous,’ cos it could mean the bloods not getting to a certain area of the bowel and it’s dying away and they have to decide whether to get her out early or not, so that’s why we were scanned so often. Trying to think of the sequence of events. So yeah we were there all the time, I remember one time we went up there I think I was about 30 weeks pregnant and suddenly they said ‘Oh it’s swelling up on the outside so and I could even see big like bulbous bit of bowel but then they were umming and arring as to whether to get her out or not then they were like it was too early she was only 30 weeks got to keep her in and monitor you more, so it was a right old trek to get up to London and back all the time so it cost a lot of money in the end but . So during this period as well I wasn’t really coping very well with it so it was a bit kind of, it was an odd sensation in that something terrible happened to you if something terrible’s happened to you if, if sometimes people just go to their beds, cry drink a load of alcohol, gorge on chocolate and then try and get over it but I felt like I couldn’t do that, everyone else around me could do that but I felt like I had to keep going so I just kept going. And when I look back at it now I think I probably didn’t ever deal with it properly because I just kept going because I thought I can’t not I can’t go to take to my bed and just, just cry because then I feel like I was affecting her. But there were a few points were I did have a bit of a breakdown I’ll be honest cos I was just like, specially my job at work you’re seeing these horrible things that happen and you see lots of things that happen to people that you think like oh come on grow a pair that’s the worst thing in your life and I think even once at work I told someone were to go because they were moaning at me about something stupid and then I took a couple of months off sick at work because I just couldn’t cope going in and it was mainly because as well every time I went to work, because I work in a big place everybody cares and everybody asks you every day ‘How’s the baby how’s it going?’ and you end up talking about it 50 times a day, you can’t go in and escape from it because you’re saying the same story every day to everyone and it’s cos they care but to me it was like reminding me every single second of the day that I was in there. 
 
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Amy E had a plan in place with her local hospital in case she did not have time to get to the specialist hospital to give birth.

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Yeah that’s the specialist, yeah surgical unit for the South East cos it is, even around [county] it’s, the closest surgical unit, cos everywhere else level 3 units I think but they’re not surgical ones, so. Cos that’s the other thing when I was pregnant I had to go to [main local] all the time and this is good as well [main local] Hospital which it’s still 50 minutes away but it’s closer than [specialist surgical centre] it’s my local hospital with a high level neo-natal unit, they don’t do surgery but they, but they I saw a consultant there from the neo-natal unit when I was pregnant and they basically put a plan in place in case I didn’t make it to [specialist surgical centre] in case I went into labour early. Cos I was panicking what if I don’t make it to [specialist surgical centre] where do I go? Cos what hospital, if I go to [local] they’ve got nothing there and what would you do. So they, that’s ordered in, ordered the kit like the silo and everything so if I had her there they could stabilise her and get her into an ambulance and get her to [specialist surgical centre] for me, so at least I knew then I thought at least I know if I can’t get anywhere else I’ll get to, get to [specialist surgical centre], I’ll get to [main local] and [main local] can, she won’t die because that’s what I was thinking, if I’m somewhere where they can’t, they can’t deal with it what do I do wrap her in cling film myself and drive her up to [specialist surgical centre], you know.
 

Amy E was very frightened as she waited for her labour to progress. A midwife was very supportive.

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So went up to [specialist surgical centre] and they did the scan on me and they said you need to have her now and ‘you’re gonna be induced now so go over to the birthing suite,’ and I said to [husband] ‘I knew it.’ So went in there and I was induced just with a pessary and at 36, 37 weeks I was just dead on 37 weeks had a couple of steroid injections and so it was all systems go. But because I was only 37 weeks and I just had the induction they left me for one day monitored up and then my contractions started within about 12 hours so I was quite lucky that worked. And I remember it was Wednesday afternoon that I got induced I had her on the Friday morning it must have been the Wednesday night cos I sent everyone home and I was sitting up cos I was monitored constantly and I just had a little moment to myself, one of the midwife’s caught me crying and cos I was just a bit overwhelmed because I was thinking, I didn’t want anyone to catch me crying but it wasn’t that I wanted attention I was just on my own in my little, my little curtains round my bed and just didn’t really, I just thought what’s to come I didn’t know if she was going to live I didn’t know what was going to happen to me, never given birth before. And I’d already been told I was not having any pain relief really other than gas and air so that kind of fear, cos I’d never done it before. And it was a busy, busy night in that place and that just scared me even more cos I could hear screams and stuff. But this midwife came across me, she was called [midwife], she was absolutely amazing and she just sat down held my hand and she went ‘I’m having a break in a minute I’m gonna come back and have my break with you.’ So we had a cup of tea together and she said to me ‘I promise you if you give birth overnight in the next couple of nights I will make sure I deliver your baby cos I’m on nights.’ So cos I’d told her how I felt, I felt like someone knows what’s going on. And so my contractions started the next day and they were going stronger and stronger and stronger and I got finally moved to my own room and they were coming in all the time, I didn’t really know how close I was, but they examined me and said ‘Oh you’re only 1cm,’ only 1cm, they’re coming like every five seconds, you know.

And when I got to my own room I realised then, cos afterwards they told me they were keeping me back because they wanted me in the room closest to intensive care unit so that they could get her in there but I didn’t know that at the time. And so I got in there and I had my mum and [husband] with me, my husband, and then I got to the point where I was saying I want an epidural and they were saying you can’t have one, you can’t one and I was like, great, but it got to the point were I said to my mum I need to push I was screaming, you know, I need to push and no-one was in the room just me and mum. And this is, I’d suffered with it with this pregnancy like being really anxious and fearful of this birth because of mainly cos of this bit but no-one believed me that I needed to push. And I remember the midwife saying to me ‘You don’t need to push,’ and saying to my mum ‘She doesn’t need to push, she’s just a first time mum and she’s had enough.’ And I remember my mum who’s quite, quite prim and proper normally shouting at her saying ‘If my daughter says she needs to push she needs to push just check her.’ Cos I remember thinking at this point feeling like I was holding her back and thinking I cannot have her in this room with just me and my mum cos [husband] had gone off somewhere, because she needs help and there’s no-one here and I don’t know what to do and no-one believed me it was so frustrating cos I was strapped to a bed and I couldn’t, I couldn’t even shout, cos you know, the contractions. My mum did the shouting for me and the midwife checked and I remember her the midwife’s face almost going into a bit of like yeah you do need to push and then she made a phone call and a tannoy announcement came out which I heard which said basically neonatal crash team to my room and that made me worse cos I thought oh my God, oh my God, oh my God, you know. So then out of like a shining light… Out a shining light, [midwife] just appeared in the room and at that point I closed my eyes cos there was about ten people in there and I just thought I can’t keep looking at everyone in here. And she just took over and I remember her saying ‘[Name] it’s [midwife] I’m here I told you I’d be here’ and I just thought right I can do this now and she talked me through, you know, giving birth, gave birth and [daughter] just got taken straight off and I went into a bit of shock afterwards cos I’d, I just thought I’ve never shaken like that before, but she bear hugged me like that and cos everyone had gone with [daughter], which is what I expected, I didn’t want anyone with me but she stayed with me, bear hugged me and that made me stop shaking cos I was shaking so much I was going to fall off the bed.
 

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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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. 
 

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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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.
 

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

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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.
 

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.

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Remember sitting before I went in for the scan just with like this sense of doom over me and [husband] and everybody, my husband was like what are you talking about. We went in there, in [local] Hospital and I could just see from the woman’s face that something wasn’t right and she was saying to me ‘Your baby needs surgery’ but she didn’t say it very well that’s all she kept saying ‘Your baby needs surgery’ she was very blunt about it and I was, I was saying ‘What, what I don’t understand what you mean what are you saying?’ And she was just saying ‘Surgery’ like that and I was like ‘What surgery?’ Then we kind of got like, it all kind of like finished and we got ushered into another room and then we met another midwife called [midwife] who was lovely she was a counselling midwife and she actually sat us down and explained that there was a birth defect that there was some form of hole in her abdomen but I didn’t know if it was exomphalos or gastroschisis and then she tried, and obviously I had so many questions and she couldn’t really answer half of them because she didn’t really know the answers and she didn’t know what it was, because it’s, the baby’s so tiny at that point they can’t really tell much just tell that it didn’t close up.

So she was lovely [midwife] was lovely and I still see her now.
 

Amy E stayed in the hospital house for 6 weeks, and found the staff who worked there like “mini-counsellors”.

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Well it’s about if I could drive it it’s at least two hours each way but then when you get to [specialist surgical centre] where do you park cos it’s just horrendous for parking but the first night I got discharged I went back to my mum and dad’s house in [borough] which wasn’t as bad but it still felt like I was abandoning my child it still felt like there was an elastic band being stretched and I just couldn’t wait to get back there it was just, no-one, everyone was trying to come round and see me that first evening I was like I don’t wannna talk to anyone I just want to go to bed so that it’s tomorrow and I can go back. But then the next night we got a, on the Monday night we got a Ronald McDonald house so, and that was just oh my God I didn’t know what I did until that point but without that place I would have gone absolutely mad.

And where, how close was that, was that in the hospital?

It was literally it’s a house outside the hospital, but if I stood at the front door of the house I could look up to the room her incubator was in, that’s how close. It took me, because we got called up a couple of times to come back quickly and stiches an’ all, it took me two minutes to get back there in my pyjamas, you know. So and we had a double bedroom with an ensuite and a shared kitchen with another family and it was just, I could not have survived without it and it was free and we had it there for six weeks. So and if I was trying to, I was looking into renting flats and my best friend lived in about 20 minutes away and she was willing to move out of her flat so we could live there, things like that, people were, you know, do anything to help you but you don’t want to impose on them. But yeah that Ronald McDonald place and also the people that run it they’re all like something like mini counsellors you come back at the end of the day and they want to know all about what’s happened and thy say don’t worry we had a baby last week and that happened and they’re better and so, you see all the inspirational stories on the walls and things so it feels like they know what they’re talking about. 

And they come round the wards every day, [name] her name was who runs it and, and just to see you, meet the baby and everything which is nice, nice little touch. But yeah the rest of it was, without that I really, really, really would have gone mad because I could not have faced going two hours backwards and forwards and I don’t know how people do when they’ve already got one child. Cos there was family rooms there as well, but the Ronald McDonald place have got new premises now close, another one close to the hospital with much more room so. But yeah so that was really good to have them in there that really saved me.
 

Amy E had not even met her daughter properly when the surgeon arrived to tell her he needed to operate. She was helped up to the neonatal unit to see her before she went to surgery.

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But yeah when I was in the post-natal ward I sent everyone home and the surgeon came round my bed, pulled the curtains round and I remember his name was [surgeon] he was really nice. And he basically said, ‘Look I’ve got some bad news she, it’s probably one of the most complicated case of gastroschisis I’ve seen and I need to operate on her now,’ and he basically said, ‘I need your consent.’ And I was, it was like literally I couldn’t even hear what he was saying and he was trying to draw a diagram for me to explain what was wrong with her but I was, I couldn’t I just couldn’t take it in, couldn’t take it in. And he’s like ‘Can you sign it?’ and I said to him, I said to him ‘Yeah I’ll sign, I’ll sign it,’ I said ‘I haven’t even met her, I haven’t even met her’ and he said, ‘Can you get up to the neo-natal unit?’ and I had blood all over me and everything and I said ‘Yeah,’ I remember being in the lift cos someone looking at me funny and I thought don’t even ask. 

And I went into the neo-natal unit and I literally saw her for about 30 seconds they were prepping her for surgery, she was screaming, bowels everywhere they were trying to put them in a bag and she was being, she was ventilated so I literally, that was my, and then she’s gone and I was left there again on my own and that’s when I phoned [husband], I remember going into the corridor and phoning him, having to explain that all over the phone and I didn’t really understand myself and I was like, ‘I don’t really know what’s gone wrong but she’s going into surgery.’ And he, the surgeon was saying the hole’s too small that the bowels coming out of so it’s cutting the blood supply, the bowel was dying we need to cut it open now to release all that blood, sign this consent form. Then he was saying to me, ‘There’s also another defect where her bowel is broken in two it’s never actually connected and it’s not going to be as simple case of just putting it back together, it’s probably going to take quite a few months probably over a year and so you’ve got to prepare yourself for being in here for the long haul.’ So that’s not what you wanna hear when you’ve just had a baby, and all the way along you’ve been told let’s hope it’s, gonna be a quick put it back in job and you’ll be two or three weeks, you know, so that, I was just like distraught and I was thinking so I couldn’t- so he said probably we can’t even deal with that issue yet, the first issue is to deal with, get this blood flowing back into the bowels.
 

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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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.
 

Amy E’s daughter had to be given muscle relaxation medicine so that she didn’t pull out vital breathing tubes.

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But I called [husband], it was rush hour then, so [husband] couldn’t drive back in he got the train back in and then we just lay in my bed together for four hours and I just, all we could do was close our eyes and not talk, I didn’t sleep I just laid there. And then finally the surgeon come back round he said, ‘Done the operation opened up the hole and the bowels are in a bag so you know, she’s come through that, she’s ventilated and you can go and see her in a few hours.’ So it was another few hours onto that I was allowed to go up and meet her and I just remember seeing her thinking she looks so ill, she just looked so ill.

Oh yeah, yeah so he basically was like - best case scenario, got all the bowels back in put them back together and he was quite realistic, he said, ‘I’m not sure if it will actually properly work but it seems to have done the trick’, it was almost like he was a bit like I’ll just try this out, you know what I mean, but I was just so happy cos I thought that’s the best, that’s the best case scenario so it was like complete elation like my God yes it’s worked. He said the next day ‘Just see if she actually has a poo,’ cos that means that it’s worked which is a bit of a dramatic experience in itself. But she was still in the ICU unit at that point intensive care and she was ventilated cos the pressure on her lungs was too big but this is where she, she’s like I don’t need this in she was trying to rip it out, causing her throat to bleed I could see on the, on the monitor that it, the ventilator was breathing for her but she was trying to breath in between it so she didn’t really want it in. Then she, cos she kept trying to rip it out there was so much stitching up there they were worried she was gonna split it so then she was paralysed which was awful because she was crying and moving and then they paralysed her and she just kind of went [stares] like that.

Just while it healed? 

Yeah so, it was, they said that the best, although it looks horrific to paralyse someone even a baby you can’t, you can tell an adult can’t you or a child at least you need to lie still but with a baby you can’t and if that rips open it’s just all gone. But I remember they did, gave her the drugs to paralyse her and she went like that and then she looked at me and went [flaps arm] and I was like ‘She just moved her arm,’ and the nurse said, ‘She can’t move her arm.’ ‘I’m promising you she just moved her arm,’ and I said, ‘Watch her,’ and she did it again so the nurse was like, right she’s having a bit more [laughs] so I was like, what a feisty little thing really, trying it on already. But yeah so she was in there, I can’t remember how many days she was actually in there I think she was in there a couple of weeks after and then she got moved to the next room which was high dependency and she’s still got the long line in, she’s still not eating. That was the other thing that was hard to deal with cos the nurses and doctors were saying she’s gonna be hungry she’s gonna feel hunger and she can’t have anything. So the only thing they let me give her was a tiny bit of sugar water on her lips but she could not, they said she’s got to get to through the hunger pains as well like a normal baby would be oh lovely load of milk, she can’t.
 

Amy E said she found coming home very hard. She had been used to knowing everything about her daughter’s temperature, breathing etc, and found it hard to cope knowing nothing at home.

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But yeah it was an odd sensation, when I came home it was even harder because I’d gone from knowing everything about her, how many breaths she took a minute, what her blood pressure was, what the temperature on her foot was, what the temperature on her head was, what her heart rate was, everything, to knowing nothing and I just couldn’t cope with it, could not cope with it because I just, I was just so, I just could not cope with not knowing that she was alright and she obviously had no routine because she’d been in intensive care unit for six weeks or high dependency, it’s always, the lights always on aren’t they even when they dim the slightly the lights always on, you cry someone always comes, someone picks you up all the time someone checks on you. So at home she was like that and it was just hell she just had to, she never slept, she never slept in the day, she never slept at night and when I got back no-one had you know spoken about the fact that I didn’t produce enough milk cos I had, I’d had enough stored up at that point and they were still giving it to her but I got home and I suddenly realised when I got home that I didn’t have enough milk from my stores, my frozen stuff and I wasn’t producing. So the second night in I didn’t have enough milk in my boobs to actually feed her and she was screaming and crying and I had some milk that had antibiotics in it which they told me probably was safe so I tried to give her that and she was sick and diarrhea everywhere and it was in the middle of the night. I was like didn’t know what to do, do I feed her and poison her or do I starve her cos I had nothing else and I was told not to give her normal formula because her bowel condition. So the next, so I starved her and had her crying all night and the next morning I took her straight to my GP and told them and they were like oh I don’t know what to give her so they prescribed her some disgusting Nutramigen, I think it was called, formula which I started to give her which she did drink she was so hungry but it’s not like, its’s not horrible. 
 

Amy E felt abandoned when she took her daughter home from the specialist centre, and was told to just go to the local hospital if her daughter developed any problems.

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The main thing when I got home was I just felt a bit abandoned because I was here as well no-one here really knew I was back and no-one and at [specialist surgical centre] I just had the normal appointments so it was like just go back to your GP but I didn’t, shouldn’t have been, my GP didn’t know what to do cos she was ill. They were really brilliant and they, my GP’s surgery like because I’d been told leaving [specialist surgical centre] oh, you know, she’s at more risk of her bowel being distended and swollen, blockages because her bowel’s been put in where we wanted it to go, rather than nature so if she’s sick or she doesn’t go to the toilet you need to get her to A&E well she’s a baby so the amount of times I’d phone up and say I don’t know what to do and if you phone 111 or anyone like that and say she’s got this bowel condition she’s had bowel surgery and she’s not pooing and she’s being sick every time they say bring her to A&E, so you bring her down to A&E and they look at her and they go oh take her to [main local], cos you take her to [local] take her to [main local] and they go oh yeah I think she’s alright I think it’s just a virus and you’re thinking I knew that in my heart but you just don’t quite know. But my GP surgery are great they just say bring her round and we’ll check her tummy, check her tummy and listen to it and see if its’s alright. So that was good having them here but I don’t think, it was me doing that rather than anyone else pre-empting that. I did have a health visitor come and see me when I was here cos I called up and said I don’t, aren’t I supposed to have someone come round I don’t know and they were like oh yeah, yeah we’ll send someone round and did the normal kind of does your husband beat you up kind of questions [laughs] obviously not.
 

Amy E felt lost and isolated when she came home with her daughter.

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I don’t really know to be honest I think, I think thinking back I probably did suffered a bit of post-traumatic stress I think and post-natal depression but just didn’t want to admit to myself cos I remember now thinking when [husband]’s back at work I was begging him not to leave, begging him and I felt pangs of jealousy towards him that he got to go to work. Because I also felt like the way that [husband] is and no criticism to him, but the way he is he always says to me, ‘Well what do you think, do you think we should go to hospital do you think we should give her this?’ So I felt like it caused arguments with us cos I’m saying why is it always my, why is it always my decision what if I make the wrong decision am I the one then that’s in the, blamed for not doing the right thing with her it’s to be joined up thing. But he was like well I don’t know - you know her better than me so all the-. I just felt like I was, and I remember once I just didn’t want to see anyone, my mum was phoning me and I’m ignoring it, ignoring the door I just didn’t want to see anyone to the point that someone was like just open, let us in because I just didn’t really know what to do that’s the only way I could describe it. But I got myself out of it in the end and I don’t know, I can’t really tell you how over months, but also as well at that point I couldn’t even sit down still because of my tail bone and I finally went to the GP about that, got given antibiotics and all sorts of stuff and made no difference then I got an x-ray and they were like ‘Oh your tail bones not right it’s completely smashed in.’ So they were like ‘What’s happened have you fallen on it?’ I was like ‘No but I’ve given birth’ and they were like ‘That’s what’s happened.’ 

So, you know, I think those first like eight months I was at home were hard. And also when I went back to work I went back to work after I think it was after nine months I went back, but the first lot of my maternity leave to me was not maternity leave it was being in hospital and intensive care or being home and panicked constantly that she was gonna die so that, that something was wrong with her even more wrong with her, this was wrong that was wrong arguing with my husband all the time cos none of us really knew what we were doing. But, sorry, but yeah and then I went back to work so I felt like I’d been on my- I was cheated from my maternity leave that’s why with this baby I’ve taken a year off, [daughter]’s not, she’s at big school in September so I’m really looking forward hopefully to having time with both of them and to just chill out a bit because it was, it was hard. 
 

Amy E is a police officer. Her daughter had gastroschisis and now she has flashbacks of driving a police van with the blue lights on. She was pregnant with her second child when interviewed and very nervous whether her new baby will be OK.

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And funnily enough when I had the scan it was the same woman then and I just walked in and I thought oh my God I can’t, cos I just see her as being the deliverer of bad news. But then have to say that bit was hell but then straight away we were in seeing the counsellor midwife who was the most lovely woman ever and who actually I’ve been seeing a consultant for this baby for other things cos I suffered with complications from her birth which I’ll tell you about in a minute which is now affecting how I deliver this baby, and I said to, said to them ‘I’m really panicking constantly about it all going wrong I’ve got this like impending sense of doom again.’ And they said, ‘Do you want to speak to a counsellor midwife to have a debrief?’ Cos I never really had a debrief after, cos you kind of leave, because I live in a different area you’re just kind of forgotten about, just get on with it, because I don’t live in London I live in [county] so I’ve obviously not delivered in [county] at all or been discharged from anywhere in [county] and this is another issue I had at [specialist surgical centre] and obviously [specialist surgical centre] don’t, don’t want me anymore cos as far as they’re concerned I was discharged the day after I had her. But [midwife] asked me to come down for a cup of tea probably about a month ago just a couple of hours for a chat about everything, met [daughter] again.

So she’s a midwife locally?

Yes she’s a team, she’s a midwife in [county] she’s like a screening co-ordinator midwife slash counselling midwife, so if something’s not quite right in the scan you go and see her and, you know, she can, she’ll talk to you she’s a lot of experience. And my community midwife’s brilliant as well, [community midwife] she’s, I’ve got the same one now I mean without her just I would see her every week or twice a week sometimes and just when I was pregnant, just having her tell me that her heart rate, her heart was beating, you know, cos she didn’t move much and the reason why she didn’t move much was because she had so much bowel she was like she got stuck she couldn’t move. But [community midwife] really did keep my mind at rest, you know, and with [midwife] as well with the both of them so I really did appreciate having that level of care locally. Because a lot of the time consultants they’re so busy you can’t phone them up and ask something you don’t, I don’t know what I’m talking about half of the time so I would say I’ve got this bleeding and they would say that sounds absolutely fine that’s normal don’t worry about it rather than okay come into hospital or I’ll phone and say I don’t think she’s moving and they’re like get yourself in, come in. So yeah they was, those two the community midwife and [midwife] were brilliant.
 

Amy E had poor experiences with a counsellor, but was then offered someone through her work as a police officer, who she has found very supportive.

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But I asked to see a counsellor and I saw an NHS counsellor at the [birth centre] Centre who was awful she made me feel, she just made me feel awful and I trundled up to [specialist surgical centre] from here to go and see her on the train which took me about two hours and I remember the second time I saw her, the first time I saw her she basically said, ‘Have you not like thought of having an abortion?’ She said it like that, and I was like now that to me was just like what the hell, why would I even consider, I don’t need you telling me that. And because they had broached it with me and they said we don’t think you should because, because she will probably be fine. But then I remember one session, second session I sat down and she got a phone call from the car park downstairs and cop up or something saying her car was in inappropriately parked and she just left, 45 minutes and I was sat there, so after 45 minutes I just thought I’m not having this anymore so I took it up, went to the receptionist and said ‘She’s just pissed off and left me,’ I was so angry, all the anger was directed at her. And I said she’s been gone 45minutes and my appointments only an hour long, so I’ve come on two hours on a train here and two hours back. And I remember the receptionist saying ‘Oh we’re so sorry, we’re so sorry can you write this down write this down can you complain about her because we have lots of different people complaining about her,’ I said ‘I just wanna go,’ cos I was crying and I was so upset so I just left. And then when she phoned me I said ‘Well why did you leave?’, having a go at me, I said because ‘You’re supposed to be counselling me and you just left me,’ and said, ‘Well I would have rearranged your appointment,’ I said ‘It’s not the point.’ Then a midwife from there phoned me and asked me to put a formal compliant in but I never did because I was never at a point in my head where I could even think about that. But I did see a counsellor with my work who was, she was an ex-midwife and she said she handpicked me out of all the, and it was good talking to her because she didn’t know anyone else and didn’t know any of my family so I could actually say how I felt cos a lot of the time in my pregnancy I really detested even looking at another pregnant woman because I thought, I just I know its’s horrible but I used to think, I bet everything’s fine with you and I’d be judging them if I saw someone smoking when they was pregnant I’d be like, bet your baby’s fine I’ve done everything right and look at what’s happened to me. But she helped me get through the last stage until I got back to work when I’d had her like it was good to come back to work cos I felt like myself again. But…

How often did you see her?

I saw her once a week.

For how many weeks?

For well I think it was for about ten weeks until the end, she was really lovely she was she was just nice having, because she’d a level of knowledge of midwifery as well and she’d gone away and researched what was wrong, she didn’t know about what was wrong but she’d researched it, I felt like when I was talking to her that she actually had some level of knowledge of what I was saying rather than just anybody who, because obviously she’s a police counsellor she’s not, but they do counsel you for anything. And the fact she said to me ‘Oh I handpicked you out of, out of the bunch’ I thought well she’s chosen to help me. So she did really help me she taught me some relaxation techniques that helped me in intensive care as well just helpful when you feel like you’re completely out of control how to get yourself back in the room and that did help me a lot a couple of times when I thought like I’m about to explode. I can’t even describe it any other way.
 

Amy E’s matter of fact conversation with the surgeon was just what she needed.

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So he flew all the way back came straight to [specialist surgical centre] that evening and or the next it was early hours of the morning and he was really what I needed because he was matter of fact about it because at that point one of the nurses who had made a comment to me saying oh you’re gonna be in here a long, long time and I just thought oh I know that you don’t need to tell me. But because I just felt so despondent because everyone else’s baby seemed to be getting better and mine was getting worse. and there was no progress being made and I didn’t know what was gonna happen and the doctor he literally he was very calm, very careful about what he said, if I asked a question he really thought about the answer and I appreciated that’s what I really needed and he kept me calm at that point. I said to him ‘I really need to know what you’re gonna do,’ and he said, I said to him, ‘I’m gonna operate on her tomorrow morning but I can’t really tell you what I’ll do till I see her in the operating theatre.’ 

And I said to him ‘What is the worst case scenario, I need to know?’ and he just said to me ‘That she dies.’ And I said, ‘Okay what’s the best case scenario?’ He said, ‘The best case scenario is that I fix her bowel defect,’ cos he said I, he said to me ‘I might give it a go’ and see one bit of her, end of her bowel was really thick because all the bile had been coming in backing up and coming out of her mouth and the bit from that bit the break down to her bum was like a tiny, tiny, tiny thin tube like it would be attaching a really thin tube to a to a really fat tube, he said ‘I might try and do some kind of plumbing and spray it’ but he said ‘I can’t tell you I’m gonna do that until I go into the operation,’ and that would prevent her from having a stoma on. So those are the two, he goes ‘Oh the middle option is that I’ll get all her bowels back in sew her up and then we deal with that defect another time,’ but the fact that he was that matter of fact with me is what we needed, I didn’t want someone to tell me oh it will be alright or just not tell me the truth, he was really careful about what he said.
 

Amy E felt she wasn’t given as much information as she would have liked about her daughter’s gastroschisis*. It was a case of waiting and seeing, if her daughter’s case would be straightforward or complex.

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Do you think that was a help, did you have enough information before she was born?

I did feel like a lot of the time it was we can’t really say much, can’t really tell you much you just have to wait and see. Yeah more than, they probably could but then I can understand why they telling you too much, too much knowledge can be a bad things sometimes. So if we’d had a normal case of gastroschisis* I would have probably said that’s fine but because we had a really complicated one then it didn’t prepare me enough, but I wouldn’t have wanted to be prepared if I wasn’t going to have that outcome, so it’s a bit odd really, but yeah it was good seeing the consultant surgeon before, it was good seeing the neo-natal unit. I didn’t know about Ronald McDonald house if I had known about that perhaps that would have made me feel a little bit less anxious because I live so far away I was constantly thinking what am I gonna do, I don’t know, just, you know, so that probably, selling that more. And I was speaking to [name] and the people, women in there McDonald, I think it’s slightly changed now, couldn’t at the time publicise what they do because they can’t be seen to be gaining from a charity.

So he flew all the way back came straight to [specialist surgical centre] that evening and or the next it was early hours of the morning and he was really what I needed because he was matter of fact about it because at that point one of the nurses who had made a comment to me saying oh you’re gonna be in here a long, long time and I just thought oh I know that you don’t need to tell me. But because I just felt so despondent because everyone else’s baby seemed to be getting better and mine was getting worse. And there was no progress being made and I didn’t know what was gonna happen and the doctor he literally he was very calm, very careful about what he said, if I asked a question he really thought about the answer and I appreciated that’s what I really needed and he kept me calm at that point. I said to him ‘I really need to know what you’re gonna do,’ and he said, I said to him, ‘I’m gonna operate on her tomorrow morning but I can’t really tell you what I’ll do till I see her in the operating theatre.’ 

And I said to him ‘What is the worst case scenario, I need to know?’ and he just said to me ‘That she dies.’ And I said ‘Okay what’s the best case scenario?’ he said ‘The best case scenario is that I fix her bowel defect,’ cos he said I, he said to me ‘I might give it a go’ and see one bit of her, end of her bowel was really thick because all the bile had been coming in backing up and coming out of her mouth and the bit from that bit the break down to her bum was like a tiny, tiny, tiny thin tube like it would be attaching a really thin tube to a to a really fat tube, he said ‘I might try and do some kind of plumbing and spray it’ but he said ‘I can’t tell you I’m gonna do that until I go into the operation,’ and that would prevent her from having a, a stoma on. So those are the two, he goes ‘Oh the middle option is that I’ll get all her bowels back in sew her up and then we deal with that defect another time,’ but the fact that he was that matter of fact with me is what we needed, I didn’t want someone to tell me oh it will be alright or just not tell me the truth, he was really careful about what he said.

* 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.
 

Amy E lived two hours away from the hospital where her daughter was being cared for. She went to stay with her parents the first night out of hospital, as they lived closer. She didn’t want to talk to any visitors.

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Well it’s about if I could drive it it’s at least two hours each way but then when you get to [specialist surgical centre] where do you park cos it’s just horrendous for parking but the first night I got discharged I went back to my mum and dad’s house in [borough] which wasn’t as bad but it still felt like I was abandoning my child it still felt like there was an elastic band being stretched and I just couldn’t wait to get back there it was just, no-one, everyone was trying to come round and see me that first evening I was like I don’t wannna talk to anyone I just want to go to bed so that it’s tomorrow and I can go back. But then the next night we got a, on the Monday night we got a Ronald McDonald house so, and that was just oh my God I didn’t know what I did until that point but without that place I would have gone absolutely mad.
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