Barbara

Age at interview: 44

Age at diagnosis: 38

Brief Outline: Barbara was pregnant with her second child when the 12 week scan showed that she had gastroschisis*. She spent 6 weeks in hospital, but is now a healthy 6 year old.

Background: Barbara is a university lecturer. She is married with two daughters.

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Barbara was expecting her second daughter. When she went for her 12 week scan, they discovered that her daughter had gastroschisis* and would need surgery after she was born. Barbara had a difficult pregnancy. In addition to worries about her unborn daughter, she felt very unwell and tired, and was diagnosed with an irregular heartbeat. So doctors were monitoring her closely. Barbara and her husband had meetings with a surgeon during her pregnancy and had seen round the neonatal intensive care unit (NICU)*, but there was still a great deal of uncertainty. Doctors were not able to predict exactly how long their daughter would need to be in hospital for. 

In the end Barbara was induced and gave birth to her daughter naturally. She was transferred to the nearby children’s hospital where she was put on the NICU and stablised. It was several hours later before Barbara could go and see her. She was in an incubator and her bowel had been put in a silo, suspended above her body to try and encourage the bowel to start moving back into her abdomen. She had a rocky time in NICU – the first attempt to close her stomach did not go well. She had several operations to put lines in for feeding and medication, and she developed infections several times. Juggling visiting hours, while recovering from the birth and looking after her older daughter, who was 6 years old at the time, meant that it was a really intensive and difficult time for Barbara and her husband.

At 6 ½ weeks, Barbara’s daughter was well enough to come home. However she still had reflux and feeding and sleeping was difficult for a few years. Now the challenges of her early months are far behind them. At the time of the interview Barbara’s daughter was 6 ½ years old, active, healthy and thriving in school. Her scar is barely noticeable and she has only mild symptoms from her reflux. 

*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.

Barbara describes how her husband was so shocked he fainted when the sonographer left the room to find a colleague.

So we went for the scan and it was all as usual and my husband gets kind of anxious about these things, so he just gets sort of over excited and I could see him looking at the picture and you could see the heart beating so you had that sort of moment of relief and he was like ‘Oh it’s our baby,’ so excited and I just sort of hold it all in until I hear that everything’s okay, so I hadn’t relaxed yet but he had relaxed everything was fine. And then the stenographer she just said I’m sorry there there’s a problem I can see that there’s a problem with the baby’s tummy and that the bowels are outside her tummy that’s all I can tell you I can’t tell you what that means I need to go and get the doctor and he will speak to you more. So she went to get the doctor at which point my husband passes out on the floor just with the shock of it because he’s, he was all excited anyway and he’d just seen his baby and he thought everything was fine and then he got that news so. I was furious with him, absolutely furious because I thought oh my God I’ve got this baby in me and there’s all of this, and now I’ve got to deal with you, how bloody selfish, it’s ridiculous that I’m ashamed of myself I was so cross with him that he’d given me something else to worry about. So anyway I got him sorted, called for help and they took us to this little room to wait on the doctor but it was really a long time before anyone came I think about 45 minutes to an hour and of course [husband]’s asking me questions cos I’m a health professional so he’s going ‘Do, do you, what do you think this means’ and I said, ‘I don’t know, I don’t know’ but I can remember saying to him ‘It doesn’t sound compatible with life to me, it doesn’t sound like this is something that would be alright.’

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

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.

Barbara felt it was a real battle to establish breastfeeding for her daughter who was in hospital with gastroschisis. She did in the end though, and breastfed her for 15 months.

The other thing that was wasn’t great was the support for me wanting to breastfeed so, you know, given all that’s going on I was, you know, this is what I’ve gotta do and it was actually my midwife, my community midwife who sorted me out with a pump and all of this and so, and because I had a clue, I’m a health professional and I’d breastfed a child before I knew what needed to happen but if I hadn’t had that or been determined or asked questions, no-one said a word about it no-one was interested because as far as the medics were concerned, this baby wasn’t getting fed for three weeks anyway, you know, and I just don’t, there was just no expectation but for me it was really important because this was one thing I could do. So yeah.

So I did that but they had a breastfeeding support nurse in the hospital and they had a little room that you could go to this kind of miserable place that, you know, so they had equipment there as well that I could borrow when I was there during the day. So I would go away to this little room with a pump and in some ways that was nice as well cos it was a break away from staring at sick babies you know, so I’d go away and do that. And you get into a little rhythm of where to put bits and bobs and how to sterilise them and whatever.

But you didn’t really get support for that at the beginning?

No, absolutely not, but and even the breastfeeding support nurse the one thing that I remember from her was that one of the nurses had said ‘Oh you know, a mum has been here all day would it be alright if I give her-,’ because there was a ward round and I had missed, there’s only a tight window for going to get food in the canteen and I’d missed that so she said ‘Can I just give mum something to eat off the trolley I believe we can do that for breastfeeding mums?’ and the breastfeeding support nurse said, ‘But she’s not breastfeeding is she?’ because my baby wasn’t able to eat and I wanted to punch that woman, it was the most insensitive thing to say to a mum who’s sitting setting her alarm every three hours to do this, you know, she wouldn’t even give me a free meal. so yeah, but, you know, I was determined so I did it and like I say it was the thing I felt I could do, so I was obsessed about it.

And was that important?

Yes.

And you couldn’t do anything else.

No I couldn’t do anything else for my baby I couldn’t even pick her up at this point, I couldn’t feed her, I couldn’t comfort her when she was crying, I couldn’t do anything. So yeah it was something I could do and actually it worked, you know she, I breastfed her for 15 months so screw them all [laughs].

Barbara’s daughter had gastroschisis. There were lots of joyous moments as well as lots of heartache.

So I’m just a- when things are hard we just get on, we just do whereas [husband] just sort of, he gets down sort of stops functioning. Yeah just a different styles, he would just, he would just want to ask questions of me all the time and I didn’t really feel I had the answers or feel like, I don’t know, yeah it was just messy and difficult and then, you know the sleep deprivation neither of us coped well with that so we, you know, I was, I was, it was funny I was like so thrilled to have her and, you know, she was turning into such a wonderful wee thing, but at the same time being physically wrecked with the, you know, I feel bad because I’m aware there’s people here maybe about to go through this but are gonna hear it and, you know, lots of it was joyous and if I’d known at any moment in those six and a half weeks where we would end up you know, it would have been so helpful.

Barbara was relieved when she went in on her second morning that the night nurse had been cossetting her daughter and was lovely to her. It felt very different to the nurse who had been on duty the day before.

So by this time they had untangled all the stuff and so she was lying in her littler incubator thing with her bowel in her silo* suspended and it was okay cos she was calm and quiet and but the nurse who was looking after her was just, just not great, she didn’t say hello to me she didn’t introduce herself, she didn’t say anything kind, she didn’t say anything. I was crying and she didn’t say anything, she didn’t put her hand on my shoulder she didn’t do anything, she just beetled about doing what she needed to do. And I was sitting on a hard plastic chair three hours after delivery at this point and it was actually one of the other mums from the, whose baby had been in for some time in the it was high dependency she was in. It was, it was her who came over with one of the big sort of padded chairs and said is this your baby, have you just had a baby, I think you should have this chair and it was just so kind I can remember thinking I’m not sure it’s you who should be looking after me. Anyway so I sat as long as I could but I was wrecked and so we went home there was nothing we could do anyway so we went, [husband] didn’t want to go home but I really did. And I just wanted to come home and sleep and so we came home but then the next day when we went in of course the shift had changed so there’d been a night nurse on, we came in about 8:00 in the morning and it was like night and day, you know, she’s put a little soft thing underneath the baby, underneath [daughter], she’d put this little thing around her head so she looked sort of supported and she just looked sort of cosseted and cared for and the nurse was so lovely to me and I thought oh gosh, you know, maybe this will be alright. But I did think this, everything, I mean everything was about [daughter] that first day and that’s fine but I think you know, knowing that mums have just given birth I think maybe a bit more could have been, like I would have done a bit more I think in that situation to look after us but anyway that became a theme it’s not really about the parents in these children’s hospitals.

Barbara said they just did radio silence when their daughter was in hospital.

Yeah no we really didn’t and actually it would probably be different now with Facebook and things like that but at the time it would have required me to text everyone and I have to think of all who might be worried about us, I think we just did radio silence and when you know, she was born we put out an announcement and when you know, e-mailed all our friends and when she got home I let everyone know but probably for most, except our closest friends who would come and see us and you know, like my work colleagues our whatever they just had to, they didn’t know. And they didn’t want to intrude and actually it was the best we just were in this weird little bubble of reality that we just got through on our own no we didn’t really keep in touch with people at that time, just maybe close family and friends. Cos it was so different like one minute you’d be celebrating some little achievement and then the next day you were worse off than the day before and it just got really tedious, you know, having to, you know, get people’s hopes up ‘Oh she’s doing great she got to 5 mils,’ and ‘Oh God she’s back in surgery’ and, you know, it’s just, just too much.

Barbara would spend most of her day at the hospital, and then go home in the evenings to look after her other daughter. She passed long hours by her baby’s side.

Well they’ve got parent accommodation but if you live in [city] you’re not eligible for that so we just had to come home. So what we would do I would spend most of the day there and, I can’t, [husband] must have gone back to work at some point, I can’t remember maybe not, I can’t remember, but we were just, you know, we had to be home to pick up [older daughter] from school and so often [husband] would go up in the evening so I would come home and meet [older daughter] from school and do her dinner, he would go up in the evening and we just spent as much time up there as we could, but at the same time for a lot of that time that she was in, we weren’t actually doing anything we were there to look out for her you know, make sure that people were doing what they were meant to do which we didn’t always have a lot of confidence in, but mostly it was just sitting there. But I can remember, I mean if you’d said to me, you know to go and sit and watch a sick baby for six hours a day but somehow it just went by, I don’t remember feeling like time is dragging or and we would miss mealtimes all the time, we ate terribly because we didn’t really have a functioning kitchen at home as well, we really weren’t eating properly and just not feeling great, but it was just, we just got through it not with any style or applaud, we just muddled through.

Barbara overheard comments on a ward round when doctors talked about her very rudely. She felt undermined and as though she was being a ‘pain in the neck’.

I think the proper low point was when towards the end when we were talking about, we started to introduce feeds so she’s getting it via her NG tube* was she? Something like this, yeah so she was being fed versus- through the NG tube and the idea of it being increased to an a number of mils each day and what I had asked, you know, about when they thought I’d be able to start feeding her because we were at the sort of six week mark now and they had told me if you don’t initiate breastfeeding by about that time then the baby has lost the skills that they need to be able to do it, so I was a bit concerned we might losing that window and kept asking do you think this is gonna happen cos she’s at about 8 mils and we had all these rules about when she had to get to, I can’t remember the numbers but say its 12, she had to get to 12 mils before you can wait to try. So say that had happened one day and then I’d come in the next morning to come to the rounds the early morning rounds, and where she was just across from the kitchen. So when I saw the round coming I’d gone to the kitchen to put back my cereal or whatever it was and they’d all come into the room and they didn’t know I was there and so they are having the round and she, this doctor’s relaying the case to her colleagues and she was a registrar I think and she says ‘Oh yeah I’ve had mum on at me again you know, about breastfeeding,’ and she rolls her eyes and she spoke about me in this really not very nice way and I honestly had not been difficult, we hadn’t, as a health professional I always think that you’re, you understand the other side and also I just didn’t want to be seen as difficult, and also just didn’t have the energy, all we’d done was ask questions. 

And so she talked about me really rudely and you know, I come in at the back and hear all of this and I just look at her and her face just fell. But what really bothered me about that day was that it told me that the culture was that it was okay to speak like that because there was no-one else looking shocked, all her colleagues on the round were just nodding and so she obviously didn’t feel, I’ve never worked anywhere where it would be okay to speak like that about a patient or a relative but it was obviously okay there. And it was just awful, I mean for me just to see the look on her face when she realised I was there that was enough we never complained about it, all her colleagues had seen it, it must have been the most humiliating thing ever. But it was really awful and that was the moment when we just thought oh, you know, these people see us as part of the problem they don’t see us, like to me we’re part of the solution and like we’re the ones that have got to look after this little thing when she comes home and it’s not gonna be easy and I would have thought it would be worth keeping us on board but I just think they saw us as just a pain in the neck. And the other thing I think a lot of the parents of babies with gastroschisis* like we don’t fit any of the boxes, mostly they’re young, problems with drug use, poor backgrounds, you know, we were none of those and I just don’t think they were used to maybe dealing with people who were more informed or more challenging, I don’t know, maybe they’re just used to dealing with people who could quite easily be dismissible, I don’t know. 

They also have lots of children there who are there because of the parents because of neglect and abuse and, so they just had a funny mixed up perception about parents I think, it was weird. And so yeah that was the low but, you know, we did meet, you know, the consultant I can’t remember what she said that day but she did she did say something to sort of to deflect the situation and, but she never said anything about it afterwards, never apologised for her colleague or anything. But I did in the end we sort of came to a sort of, you know, I liked her, I respected her and when we saw her in clinic later, she was nice but again there was something about when I came to a clinic appointment maybe about a year after [daughter] was discharged cos by this time I’m back at work, so I was in work gear had my hair done for going back to work. I was feeling, you know, I was strong again I was normal and I can remember her just looking at me going oh gosh I could see that she just saw me differently and so for me I was left with this idea that we were judged based on how we were at one of the most difficult points in our whole lives, you know, we were been living in a house that was a wreck our baby was ill I had this arrhythmia, I was a wreck. And I thought that was a shame that we….

* 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.

Barbara was wary of bad news stories and good news stories, as she felt they were not relevant to her daughter’s progress and recovery from gastroschisis.

Yeah I’m not sure really because I think it is hard to predict, and so for me probably cos I’m a numbers girl I would have liked to have seen, you know, out of all the babies diagnosed at ten weeks how many make it to full term, how many you know, are fit and well at a year have, cos they’d say oh there’s a chance that they might have reflux and they might have this and they might have that, some sense of how likely all those things were would have been helpful. I mean we did meet someone in hospital who, I mean we met lots of other people who had the same thing and some with, you know, you overlapped with them for a bit and we met people with lots worse scenarios that made us count our blessings. But I did meet one girl who had been in for over a year, she was single young mum, so this is her first experience of parenthood of spending a year in this environment that I found six and a half weeks almost destroyed us, you know, so you know, she was obviously at the worst end of things I don’t know, I don’t know what would have been helpful. Maybe, you know, the other thing, I did read the happy stories and actually while we were in there was a probably a six year old and her dad came in cos he wanted to show her where she had been when she started to ask questions and I can remember the nurse saying to me oh that must be nice to know that, but it really wasn’t helpful because I was like well that was her, that doesn’t change any chance of it being my daughter, you know, it doesn’t chance the likelihood for my daughter that she’ll get to that or not it was irrelevant. And although I’m saying the bad news stories were upsetting I’m not sure that I would have found the good news stories, I’m not sure if it would have helped at all. But I think just to have some sort of story about the range of things that have happened to people might be good, so exactly what you’re doing I think is a great idea.

Barbara went online and saw some heartbreaking stories. She decided she would be better off not looking any more, and taking it one step at a time, and see what the doctors had to say.

So, you know, they told us as much as they could they were nice but we were just reeling really and I came home and I think I had I had something the next day, something important workwise, so I just e-mailed my boss to say look we’ve had some bad news and I’m not gonna make it and then just went on the internet and started trying to find out, cos it wasn’t something I’d ever heard of and of course then you go on the internet and this is why I was keen to do this, because it’s quite frightening what you see because of course the people who go on the internet with the long detailed stories are often the people who have had the worst outcomes because the people with good outcomes just get on with looking after their baby, you know. So there was some really heart breaking stories on there, so I made the decision at that point that I didn’t want to know anymore and that I would just we would just go through it one step at a time and we would we would just see what the health professionals had to say and stick with them and whatever they said. And but it just so happened that the next day that I had my appointment with the midwife, you know, they wait for you to have this scan and then they book you in do all your bits and bobs, and so I had an appointment with her the next day and of course she’d been told and she was just wonderful I still feel so warmly about her and I’ve seen her, and I’ve since and told her so.