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Paula

Age at interview: 49
Age at diagnosis: 46
Brief Outline: Paula was expecting her first child. She developed Amniotic Fluid Embolism after the birth of her daughter. Both mother and baby are fine.
Background: Paula is a university lecturer, living with her partner. They have one daughter.

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Paula was expecting her first child. She was aware that as she was an older mother, doctors were concerned to monitor her blood pressure closely throughout her pregnancy. But she had a good healthy pregnancy. She went in to labour when her daughter was 12 days overdue. She and her partner went to hospital on the Monday evening, and it was a long labour. Her daughter was not born until Wednesday morning, with forceps. She had had an epidural so found pushing hard to feel, and was exhausted when the baby finally came. Her baby was fine, but soon after she was born, she felt that there was someone pressing on her chest, she couldn’t breathe. She heard one of the medical staff mention something about ‘too much bleeding’ and then they sedated her. When awake she discovered she had had amniotic fluid embolism (AFE), a very rare complication of pregnancy in which amniotic fluid, fetal cells, hair, or other debris enters the mother's blood stream via the placental bed of the womb and triggers an allergic reaction, and had been haemorrhaging. 
 
Paula was next aware that she was coming round in ITU. She was groggy and didn’t really know where she was, and wanted to see her baby. Doctors came to explain to her what had happened, but it was not possible for her to see her baby, who was being cared for in special care and by her partner. After a couple of days, when she had stabilised, they managed to transfer her to a room in the maternity wing so she could be with her baby. She was grateful for this opportunity to see her daughter, but was really too ill to stay there. She needed constant kidney and blood tests to try and establish how she was recovering from the AFE. She was being seen by blood and kidney specialists. After a couple of days she was transferred to a haematology ward for further tests. A consultant fought hard for her to be able to have regular visits from her baby, even though she had been sent home with her father by this stage. After 12 days she was discharged home. She had to go back regularly for blood tests to check that her recovery was progressing.
 
She was very tired, and she and her partner had to cope with the shock of a newborn as well as the serious illness that she had been through. They were shortly due to re-locate, which meant her recovery took longer. She was monitored by her GP, but did not need to revisit the hospital after the first few weeks. She was offered no follow up from the hospital. 
 
In the 3 ½ years since, she has tried counselling twice, once through a children’s centre, and once through the GP. She has found this helpful, but would have liked more sooner, in the first year.
 
 

Paula was sent to intensive care after she had amniotic fluid embolism. When she woke up she felt...

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Describe to me waking up Intensive Care.
 
Well you initially wake up and just feel like you’re coming out of a very, very heavy dream. Very heavy sleep. So it kind of seems like maybe, you’re still dreaming because the whole thing is very strange obviously. So I felt like my, my immediate feeling that I was kind of in a bit of a tunnel. It seemed really dark. I think it is, I think the lighting is you know, very subdued and everything. But that kind of obviously going to sleep in a very bright theatre with lots of hubbub and not a huge amount of noise, but a lot of activity and light and then waking up and clearly not being in the same place. Because obviously when you initially wake you just assume you’ve only just gone out and you’ve come round.
 
But of course I woke up just thinking really, like thick head, and thinking, you know, this is really dark and then, you know, immediately just said, “How’s the baby?” Because as far as I was concerned it was like minutes ago, you know, so… It took a good few minutes. I mean somebody was there immediately, somebody was there. You know, right away. But… and that, and that person… I think I had the same person actually through, through the time I was there,  who was a chap who I still to this day don’t remember his name which is awful but he was wonderful and he  was immediately very calmly telling me “You’re okay, you’ve had to have a bit of an operation. You’re… the baby’s fine, but you are in Intensive Care and you know…” He was just kind of going through the motions of very calmly telling me. And then started asking me certain things about did I feel, you know, presumably checking me over. You know, and I remember saying, “Oh can I have a drink of water.” And things like that, you know, just… so but just gradually computing as to what, what’s happening and I think I probably asked again, “Are you sure the baby’s okay.” Because I suppose what was immediately dawning on me was that something serious must have happened to me.
 
 
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Paula explains how important it was to her that her daughter was dressed in the outfits she had...

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And really odd things like we lost, and it doesn’t matter in the scheme of things, but my baby stuff that I’d packed for her to wear, just disappeared somewhere, because like my bag had gone God knows where in the whole process, and so the little outfits that I got for her, just gone. That was actually the thing that upset me the most because I got these photos of her from the baby unit dressed in some strange clothes and I thought but I picked out these outfits where have they gone? And of course nobody knows because it’s all been so chaotic. But it was like, they were for my child, you know she’s wearing this strange clothing that I haven’t chosen. And it doesn’t matter, it really doesn’t matter, because she’s being looked after but I still to this day think where the hell did those things go you know, because it was just something that I’d planned for and it just wasn’t there, you know? And I think that was the thing that, you know, you can’t control everything, that’s the biggest thing about giving birth, but certain things you’ve planned for and then when that’s taken away from you, it’s like suddenly that little thing becomes so big to you, you know, because even when you get a picture she’s wearing some bizarre clothing that you haven’t chosen for her, you know, I mean it just, it was like an added insult you know, after what had happened. And you know, I was still, I still couldn’t to this day understand somehow somebody couldn’t have said, “Oh it’s really important. That the things that this Mother’s chosen actually end up with her baby, because if I hadn’t have been ill that’s what would have happened I would have been able to dress her and you know, it just didn’t happen, and it’s almost those little things become enormous emotionally, you know, when you just try to hang onto something that’s familiar, you know, and the child that you haven’t even met properly yet isn’t even wearing the clothes that you’ve chosen for it, you know. I think that was really, really odd because that was the thing that you know, sparked me off of, how little control I had over the situation. 

 
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Paula felt there was a tension between her clinical needs as a patient, and her needs as a new...

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I mean I suppose my over-riding feeling was afterwards that there’s always got to be a balance of the medical care and the fact that you’re also you know, a new Mum, that I understood completely that their priority was, you know, I had nearly died, and their priority was to work out what the long term impact of that was. I understood that from a clinical point of view. But I did feel that there was this kind of gulf in understanding of, as well as being a patient with these medical needs, I was also a new Mum and so I had, you know, you know, even the tedious things like, you know, wanting to still try and be able to breastfeed. I had to push for that, to say can somebody get me a machine? Can somebody show me how to do this? You know… and because I’m fairly bolshie that did happen. But again, had I been even more unwell or not as bolshie, I don’t know whether it would have done. Now it still didn’t work out for me, but in other circumstances it would, it could work out for somebody. So it’s those things you shouldn’t really have to fight about they should be part of the package that says as well as these clinical medical needs, there are also these things that you would normally be doing about you know, almost the midwifery things. You know, they kind of went out the window. 

 

When Paula woke up in intensive care, she was worried about whether her daughter was OK. If...

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Of course I woke up just thinking really, like thick head, and thinking, you know, this is really dark and then immediately just said, “How’s the baby?” Because as far as I was concerned it was like minutes ago so … It took a good few minutes. I mean somebody was there immediately, somebody was there. Right away. But that person… I think I had the same person actually, through the time I was there, who was a chap who I still to this day don’t remember his name which is awful but he was wonderful and he was immediately very calmly telling me “You’re okay, you’ve had to have a bit of an operation. You’re… the baby’s fine, but you are in Intensive Care” He was just kind of going through the motions of very calmly telling me. And then started asking me certain things about did I feel, you know, presumably checking me over. I remember saying, “Oh can I have a drink of water.” And things like that, you know, just gradually computing as to what’s happening and I think I probably asked again, “Are you sure the baby’s okay.” Because I suppose what was immediately dawning on me was that something serious must have happened to me.

Yes.
 
Therefore how could I be this bad, and the baby be okay. You know, so that was, I think that’s the confused thing that’s going on immediately you know, and also the fact that you have no concept of time, or how much time has passed or any of that.

 

 

When she came round in intensive care, nurses chatted to Paula and found out news about how her...

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Was there a point at which you started to feel more awake?
 
Yes, a bit. Yes. I was chatting quite a lot to one particular you know, the kind of nurse in overall charge there of that part. She was very good and you know, we chatted. I suppose she was doing distraction stuff, you know, chatting about other things. And she was certainly finding out whatever information I needed to know. She was doing her best to keep the communication going because of course, with the unit where my daughter was, you know, a completely separate building, a completely separate place from where I was. So she was doing checks and all the rest of it and feeding information back to me about, oh yes, either she’s sleeping or she’s had a feed or whatever you say, stuff like that, so that was reassurance.
 
But then of course when my partner did turn up, before he’d been in to see me, he’d gone in to see her anyway. So he was able to come in and he’d got photos as well and stuff, so … we just sat and kind of tried to piece things together a bit for a while.

 

 

Paula felt that the hospital struggled to know where to put her so she could receive the care she...

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I think that...I think all along the whole experience… although there was some excellent medical care that we had and, you know, clearly I wouldn’t be standing here today had I not had that. Certainly the immediate care in the theatre that I had saved my life. The decisions they made, you know, were the right ones. But I just feel that when you’re a woman who’s given birth, but has these other complications it’s like you’re an anomaly. You don’t fit anywhere within the system. 
 
So I felt like a bit initially we were just being moved from pillar to post. Not in a nasty way, but just because there was no place for us to fit. So there was no setting whereby I could be given the care I needed, yet with the ability to see my new baby. And I know that it’s a bit like, perhaps it’s too much to expect that every setting could have that, because these events are rare. I don’t know, I just feel like there, there should have been a better way of it being resolved you know. 
 
I mean mine perhaps was very unusual and very extreme. But I bet that there’s other women who have similar, perhaps lower level complications who similarly probably feel like a fish out of water, because you don’t fit on maternity, you can’t go onto a normal medical ward and see your baby. So it’s like you’re in desperate need of medical support, but you’re also in desperate need to be able to bond with your child.
 
Yes.
 
And those two things just didn’t fit in the system, you know, despite us being in potentially one of the best hospitals in the country.

Yes.
 
You know, it wasn’t that we were somehow in an inferior setting. Had I been in an inferior setting I would have died. I know that. You know, I was in one of the best places. But even despite that, I did get the medical care I needed, but it was compromised, my mental health was compromised, because I couldn’t spend enough time, you know, with my new baby. So I do feel that that side of it. I think what I felt was that once the medical teams had taken over trying to deal with my problems, that you know, whatever it was they were trying to diagnose, I felt that the maternity lot just step back.

 

 

Paula asked to see her baby, but was told that it wouldn't be any time soon, as they needed to...

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I remember saying, “Could I see the baby?” And they were like, “Well it’s going to be a while or…” You know, they weren’t saying no, but they were saying, we need to get you sorted out first you know, and me just thinking, okay fair enough. Can I see… Because I was very, very hooked up, I didn’t really know what to, but I had lots of IV and stuff and… I didn’t actually feel that much pain, presumably because I was very, very heavily drugged but I didn’t, you know, clearly didn’t feel like kind of sitting up or going anywhere or anything like that. So I remember just kind of going in and out of consciousness, not consciousness but sleep I think really for quite, quite a period.
 
Okay and when did things start to get a little bit clearer?
 
Well it must have been, I suppose it must have been some time later that day. I’m not entirely certain how long I was actually in the, the ICU bit, because I did get moved kind of out of the most kind of serious bit into the kind of, I suppose the recovery part of ICU. And again I kind of woke up there, so I’m not quite sure, you know,  whether or not I had come round more in the, in the really serious bit of ICU or whether  they just kind of figured that things had stabilised or whatever and then moved me out you know.
 
I remember them coming round and being in more of a say, like I say what seemed to be more like a recovery area. Still had kind of IV stuff and being a bit hooked up, but there being more, you know, it being lighter and there being more people about, me being able to sit up, have a cup of tea I think. And just there being kind of, then at that point there was more kind of fully fledged conversations about what had happened and the consultant came to see me, and explained and so it was kind of dropping into place in my head as to what had actually happened. 
 
And it’s funny because I don’t remember kicking up a huge amount of fuss because I remember just thinking, yes, I can see why, you know, what I mean, I just remember thinking, they’re in an impossible situation. I’m hooked up to all this stuff I can’t go anywhere else. So they only solution for me would have been for me to be able to bring her there and that was just not, not on the cards kind of thing. And I mean there was, I mean obviously being around other people in Intensive Care we were there with like loads of complex serious things, that’s what it’s about. We were also looking around thinking well, yes obviously, you’re not going to you know, bring a baby kind of thing. 
 
In the meantime I don’t know who it was that decided this, but they allowed me to go back to maternity in order the [daughter] could come out of the special baby unit and before in fact [partner] took her home. So we spent a day in the maternity unit. They later on transferred me and it was physically, you know, two buildings away. It was a bit of a palaver you know. It was one of those things isn’t it. 
 
 

After having a life threatening condition in pregnancy, Paula had counselling provided at the...

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So when did they start to emerge those symptoms? How long after it was it?
 
It was probably around the first six, seven months mark, yes, it was within the first year. 
 
And so did you pursue counselling?
 
Yes, I mean what I actually did was, I did go to the GP, the normal referral type route and they were fine and did a referral, but of course there’s always a waiting list, a waiting time, and in the mean time I’d been attending the local children’s centre. Because I was, you know, doing full time [daughter] care and luckily they had, like drop in counsellor... and I just thought, well while I’m waiting for my ‘proper appointment’ why don’t I go and see the drop in counsellor, because I just felt like that was the time that I needed to speak to somebody and I was potentially going to wait another four months or something for an appointment. In fact it was less than that, but they always say worst case scenario.
 
So in the mean time I went into see the drop in who funnily enough kept, she was like kept apologising because she was like a trainee counsellor, and this was kind of part her training and in the event was actually better than the real counsellor that I saw down the line [laughs]. Which I thought was highly amusing. But she was great. And because may be it was based at the Children’s Centre, it was based in that environment and she was obviously there to speak to you know, new mums and new partners about issues around having had a child and then I turned up with like this really extreme thing that’s happened [laughs].
 
And so it was incredibly useful, you know, and also because it’s fairly opened ended, because it was not oh your six weeks up and that’s it. She was just like, you know, as long as she was there and she was offering it, you know, as long as you can come come, kind of think. [Daughter] was young enough that she just used to fall asleep in the pram in the corner. It was quite sweet really [laughs]. So it was quite funny.
 
 

Paula asked for counselling when her daughter was about a year old. For her, it was about the...

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Yes, so that was great. But I do wonder actually because it, it came just at the right time that I was able to go there and kind of unload stuff and I think I unloaded quite a bit of the kind of reserve anger that you kind of have there, about why should this have happened to me, you know, why couldn’t I have had a normal birth and all the rest of it if there is such thing. But you know, what I mean the aftermath was so kind of overwhelming really, that at the time you just work through it, and its only afterwards you kind of think, you know, you stamp your foot a bit and say that was really unfair, that happened to me. You know, and so I was able to do all of that with, with the counsellor then, just at the time I needed it. But I kind of think now, if I’d had to, if I hadn’t have seen her and I had to have waited for however many months it was, how much more severe my symptoms might have got, you know. So that, that concerns me actually that there wasn’t anything you know, more easily accessible, easily available. And although as I say the health visitor had been the one who suggested it way, way back when. I almost kind of think that its still, there’s quite a lot of hoops to jump through to get something. You know, as I say I was lucky that there was a different, there as an alternative route that I could go down and that may not have been on offer to a lot of people, you know, and … you know, it does, you know, make me wonder really.

 

The counselling that Paula finally started about a year after her amniotic fluid embolism really...

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And did that counselling help? I mean did it help tackle those symptoms and the anxiety?
 
Yes, certainly the, the first counsellor I saw, I think it tackled more really because I think it did have an effect over the actual PTSD type things, they definitely diminished, but I think it actually made me realise that you know, I hadn’t been talking to anybody about it at all, you know, apart from obviously briefly to the, to the few people who were actually immediately involved in it. I tended to… not really go over stuff because it almost seemed so enormous, you know, that you don’t want to, to start to talk about how big it was to people who, particularly people that you know, you know, who are part of it as well. And so I do feel that there was other stuff. You know, there was other stuff I was able to deal with through the counselling that I wasn’t even aware really that I had been kind of back, you know, putting on the back shelf really. And I think that’s the thing that you know, I’m glad I did that at that time, and had I left it, I think it would have been potentially more damaging in the long run to have just not, not unburdened some of that stuff, you know. So it was, you know, it was the PTSD that was bothering me initially, but actually I got other stuff out of it, other than just dealing with those kind of symptoms. Because I do, you know, I mean there’s a fact that the whole thing about birth is strange until you’ve done it the once anyway. The whole thing is slightly nightmarish and unreal and all the rest of it, and then on top of that you’ve got you know, a set of circumstances that are really testing you in terms of the issues that you have to deal with. So I think that certainly, there certainly needs to be a stronger recognition of how, I think those things, as I say you do put them on the back burner, because your priority is to get on with looking after your child, and that is why you, you know, you wanted to have a child in the first place is to do those things. But in the meantime there’s all this bubbling away that you’ve just had to leave sitting there, you know, so I do think that you know, it’s important that there may be something more proactive really in recognising that those, those things are really better dealt with nearer the time than left you know. 
 
So do you think you would have liked counselling sooner than the six months?
 
Yes, I think so. Yes. I mean I do think now that, because in reality she was, she was more like one actually when I actually started.
 
Okay.
 
And I think that, I think even if it wasn’t something that wasn’t as much as formal as counselling something more like having, just having, I don’t know it sounds silly, to have the opportunity to go along and moan a bit, kind of… Because all the normal groups that are open to new parents, they just weren’t the right forums for me to start… I mean I did go to NCT stuff. I was a NCT member, but you know people were talking about things that had happened and you know the usual sharing and all the rest of it, and I felt like I could say nothing, because it was so ridiculous what had happened to me. Well I would have silenced the group if I had even mentioned any of it. So the kind of things that they were mentioning that were bothering them, I was just thinking, try dying in childbirth, you know, I felt like I was so out of, out of kilter with their experiences. So the things that were bothering me were so extreme that there wasn’t a forum for me to discuss it. 
 
So I think that, I think that it’s more that really. It’s more the peculiarity of it. And
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