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Mandy

Age at interview: 35
Age at diagnosis: 28
Brief Outline: Mandy was pregnant with her first child. She developed Acute Fatty Liver and her son was delivered at 36 weeks. She started to haemorrhage and it was necessary to perform a hysterectomy to stop the bleeding.
Background: Mandy is a marketing officer, married with one son. White British.

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Mandy was expecting her first baby, and had a very good pregnancy up until 36 weeks. She started to feel unwell just as she was starting her maternity leave. At a routine check up with the consultant on the Thursday she complained of stomach pain, but he thought it was just indigestion and suggested Gaviscon. 
 
However, over the weekend she felt very poorly and when she noticed that her eye whites were “luminous yellow” on the Sunday night, she decided to take herself to hospital. Once she was in, on the Monday, doctors started running lots of tests but couldn’t work out what was wrong. They finally diagnosed her condition as Acute Fatty Liver. By the Tuesday they decided that she should deliver the baby, although she had already started dilating. She felt pretty well and strong through the delivery, and her son was born healthy at about 9 pm on the Tuesday evening. But at that point, Mandy started to haemorrhage, steadily through the night. She had a midwife monitoring her constantly overnight, but the blood loss was such that by the Wednesday morning two consultants came to explain to her and her husband what the options were – an operation to try and brace the uterus, and if that failed a hysterectomy. 
 
Both Mandy and her husband felt that the options were explained very clearly, and while they regret having to have a hysterectomy and only one child, they are accepting that it was necessary to save Mandy’s life. The operation was very tricky, and she was unconscious in intensive care (ICU) for 5 days before coming round. She was very happy with her care overall, but found the transfer onto the post-natal ward was very difficult, and she became very distressed. Although doctors were still keen to monitor her liver function, they allowed her to go home after a few days.
 
Six years on the experience is still very important and upsetting. Mandy felt very well supported by close family and friends, and although offered counseling, did not take it up. She had a follow up with the consultant at six weeks which was very helpful, and got copies of her notes about two years after the event, which she has also found helpful to read through. On her son’s first birthday she and her husband went back to visit the ICU midwives and consultants – a really positive closure for all concerned.
 
 

Mandy felt incredibly well supported while still in intensive care but found being transferred to...

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The hardest thing for me in terms of recovery is I think it was the support. Postnatally what happened was, when I woke up or you know, out of sedation five days after I was very pleased that [husband] had the opportunity to look after our son, so he could feed the baby. [Son] was kept at special care unit, even though he didn’t need it. He was a very health six twelve, so he was fine. So I think from that point of view they were extremely supportive and I think because the case was quite well we were treated very, we felt very special. So that was lovely and [husband] was very supported. But literally as I sort of woke up and they thought oh you’re fine now. It was sort of straight over to post natal ward. 
 
Which I don’t know what other hospitals are like, but [hospital’s] have improved since then thankfully. But it was a very isolating moment. Because I was obviously asleep or sedated during the sort of baby blue period, I don’t think it kicked in until later on. So I remember still being in the post natal ward and getting so distressed, crying all the rest of it and wanting to go home. That was probably the hardest bit and then it felt like nobody was listening. 
 
So suddenly the care that was all there before and I expect, you know, when you’ve, when people have used sort of IVF and they have had this special treatment, suddenly you’re, you’re with everybody else and you’re still recovering still with stitches toilets like you know, five doors down the corridor that was very difficult and isolated. So not in a bay with other women which I might have actually preferred, but they obviously thought well on you’re on your own so that you can recover and you know. But I did feel very lonely and my husband was the only person that came to visit.
 
And again in hindsight because I’d requested that I didn’t want to see anybody. It was just as well to be, you know. But in hindsight it would have been nice for people to come. My family don’t live in locally you know, they’re in Gloucester, so you know, the minute I was fine they had to go back, go to work, all that sort of thing. So that was really, really lonely. 
 
I got so upset that they did discharge me sooner [laughs]. I think their idea was to keep me until my liver functions were back to normal, but because they were so sky high, I could have been in there, you know, it felt like it could have been weeks. So my husband had a chat with them and he said, “Look you know, if there’s anything wrong I will bring her to the hospital, you know, I will bring her to hospital for blood tests every day if that’s what’s necessary.” So that was really helpful.
 
 

Mandy had acute fatty liver and doctors couldn’t stop her bleeding. Good clear communication by...

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The family obviously went through a very hard time afterwards, because then what happened was the bleeding didn’t stop. The next day in the morning we were told that, you know, they had to do something, because you know, I was, I think up to that point I had something like 14 units of blood. Something like, in the end there was 22 units of blood and 14 units of platelets to help with the clotting.
 
So the consultants came in and this bit was I felt was very good in the way they handled it. Because they had [husband] and myself and then there was two consultants who were going to sort of look at it. They brought experts in which was wonderful. I’ve seen the notes that they obviously contacted other hospitals to find out how to deal with this. And then they drew out diagrams about what could happen.
 
So the first option was to brace the wound. Which is I don’t know what they use but something that sort of puts pressure against the inside of the uterus to try and stop where the bleeding is coming from, basically where the placenta had come away. That was where the bleeding was from. So that would be the first operation.
 
And then what they explained to me very clearly was that if that didn’t work it would need to be a sub-total hysterectomy. So again they explained it in full detail. The ovaries would still be intact, because I was like worried about is that premature sort of, you know, you know, the… I can’t remember what it’s called now, but meant that’s it. So I did think oh gosh, you know, at the age of 28 do I really want that? I obviously clearly understand that there would be no more children. 
 
But it was weird, I think because they’d made it so clear and we felt very supported and my husband was very supportive as well, that it didn’t seem to matter at the time because it was either that or you know, dying basically.
 
So I think we accepted that quite early on, and even now, we’re very lucky that we’ve got one. You know, we’ve heard, you know, since then we’ve been on other forums and stuff where people have you know, lost babies and then can’t go on to have other children. So we felt ourselves really lucky, so we were fine.
 
So on the Wednesday afternoon, they obviously took me into theatre and obviously I was out of it then. But I think it was very obviously very tough for the family because I would have gone through the first operation and they kept me sedated until you know, to see how that went and that didn’t work. So what they then did was obviously go ahead with the hysterectomy. But because, you know, they’d gone through that with me, I was sort of expecting, you know, if worse comes to worse that’s what will happen.
 
 

Mandy went back to visit the staff who looked after her when her son turned one. She found it...

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The one thing that I did do when [son] was one, I wrote to the hospital, because they were wonderful. And I said, “Look, we’d like to make a donation, but I’d love to bring [son] in, and [husband] to come see you all.” You know, and they were great. They had a little party for us. It was lovely. And what they did. And what was beautiful about that. Again, you know, its, they didn’t have to do it. But we saw all the consultants that looked after us. There was about three or four of them and then we had the head of midwifery. We had the midwives that looked after us and Intensive Care people. Okay so we had everybody in this little room with a cake and everything else.
 
And [husband], I told [husband] I’d organised it. I said, “Look you can come if you want to, but I understand that…” You know, he never wants to set foot in there every again. So I said, “Look, you know.” I said, “Let’s go. Because I think it’ll be really good. So I need to see where I was, and thank the people really.”
 
So we went back. [Husband] was, was really not sure. So we went in and had this lovely party. And then we came out. [Husband] was still, you know, he was fine, but I was very worried about it. So we came and talking about it in the evening whenever. And this thing, you know what the beautiful thing about that was seeing those consultants smiling, because throughout that whole process it was all so serious, and…
 
I think that was the most lovely bit. And I needed to do that I felt, because I wanted to get closure on that. The whole thing. And I know [husband] was still getting very emotional about things. And so anyway, yes, that was the best bit seeing the consultants, seeing the consultants smiling [laughs]. And thrilled that we were all okay. So it was great for them and the comments they made afterwards as well were, you know, it was lovely, and the needed it as well. Because it was such a tense time. There were consultants that postponed their holidays because they needed to operate. There were, you know, there were midwives that… you know, that wonderful mid… my wonderful midwife who came to see me in the Intensive Care. So they really, you know, they really a really caring community. I think that made a huge difference for us because I think knowing that they cared actually above the whole professional need to operate, we need to do this. Really made it special for us. 
 
And so any way. So yes, there was a bit of closure after that and I felt it made a dramatic effect you know, for us as a family. We felt we could move on really from here. But yes.
 
 

Mandy started to bleed shortly after her son was born. Doctors tried several options to stem the...

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I remember waking up about sort of 6 o’clock (pm) feeling the contractions quite strongly. And at that time my husband still wasn’t there [laughs]. So I pretty much laboured on my own, which was fine actually. And I had the midwives come in, just to check me. And then the next thing I know is that I’m in established labour and in a delivery suite and you know, on gas and air and I have my baby. Okay he was delivered by ventouse. I was induced. I did have an oxytocin drip.  But otherwise that part of it was quite straightforward. So apart from him obviously being in potential danger. Fortunately his APGAR score was very high as well. It was 9 to 10. So against all the odds of my being quite ill that week before, he did really, really well.
 
It was the complication of afterwards that was the problem. What they then found, because they didn’t know what to expect. This is what they told me in retrospect as well. Was the amount of bleeding. You know, it wasn’t necessarily gushing as such, but my husband’s remarks were, oh you know, again in retrospect. But he came in, not knowing the condition. Because I obviously hadn’t contacted him before, which you know, in hindsight I should have done. The midwives hadn’t either. So the first contact had was the midwife asking me for his mobile and then him coming him. So he was just think oh we’re having the baby early great. 
 
So he went through the birth process as any Father would not knowing what was going to happen. The complications then happened. So he remembers going out, making all the phone calls, telling everybody about you know, son’s arrived, everything’s fine, and then seeing me on the bed with tarpaulin on the floor covered in blood. So from a Father’s point of view quite traumatic and again you know, probably could have been handled better by myself and the midwives and the staff really in that, you know, he should have been pulled aside and just said, “Look you know, this could potentially be quite tricky.”
 
The family obviously went through a very hard time afterwards, because then what happened was the bleeding didn’t stop. The next day in the morning we were told that, you know, they had to do something, because you know, I was, I think up to that point I had something like 14 units of blood. Something like, in the end there was 22 units of blood and 14 units of platelets to help with the clotting.
 
So the consultants came in and this bit was I felt was very good in the way they handled it. Because they had [husband] and myself and then there was two consultants who were going to sort of look at it. They brought experts in which was wonderful. I’ve seen the notes that they obviously contacted other hospitals to find out how to deal with this. And then they drew out diagrams about what could happen.
 
So the first option was to brace the wound. Which is I don’t know what they use but something that sort of puts pressure against the inside of the uterus to try and stop where the bleeding is coming from, basically where the placenta had come away. That was where the bleeding was from. So that would be the first operation.
 
And then what they explained to me very clearly was that if that didn’t work it would need to be a sub-total hysterectomy. So again they explained it in full detail. The ovaries would still be intact, because I was like worried about is that premature (menopause) sort of, you know, you know, the… I can’t remember what it’s called now, but meant that’s it. So I did think oh gosh, you know, at the age of 28 do I really want that? I obviously clearly understand that there would be no more children. 
 
But
 

Mandy feels grateful to be alive, without a womb, than dead with one. She sees lots of positives.

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You know, sort of, I think the hardest time and it’s probably the same for most mothers as well, is sort of returning to work. I think that’s when I really started to feel, you know, the stress of it all. And you know, we don’t talk about it much now, but probably for the first three or four years it cropped up in conversations. I think that’s good and healthy that it’s not been forgotten. From my point of view, having more children, you know, and I always thought that will be fine. You know and it is fine, you get to milestones I suppose when they go to school and you think ooh may be another one, but I think the health care professionals because they made it so clear at the start you know, I’d rather be here than, you know, as my husband put it, dead with a womb [laughs]. I’d rather be alive without one. So, you know, I do look on it as being very fortunate really. So yes, I know, it’s funny talking about it again after such a long time.  
 
And does the hysterectomy bother you still?
 
Like I said, I think because it was so clear at the start. So clear. I mean you couldn’t have made it any blunter. I feel you know, there are advantages and disadvantages to it. You know, I personally would have liked a bigger family. But then you look at our lifestyle now, and what we’ve done is we’ve obviously, you know, we knew, we know that we can’t have any more children. But I think in some ways that has shaped where we are now, six years, down, seven years down the line. You know, I’ve gone on to study, which I probably wouldn’t have done, until I thought I’d finished (having) my family. So that you know, that wouldn’t have happened yet for example.
 
I think from my, from [husband]’s point of view, I think he’s quite happy, because you know, we’ve got ourselves sorted now. The other side of it, and again, we have discussed this before in terms of, you know, if I didn’t have the hysterectomy, say the bracing of the womb all worked, that the womb was fine. We could have another child. The fear of then going through this potentially again. Even though they say that chances of getting it again are reasonably rare apparently. That’s what the consultant told me. I just don’t think emotionally I could have done that. Because not only is it my partner whose then potentially at risk of losing a wife, you know, I’ve got an older child.
 
So when I look at it that, I sort of almost am thankful that I had the hysterectomy because I’d rather than, because then, you know, the other option would be, you know, if we did get pregnant, would we carry on, or would we have to think about a termination and I just wouldn’t be able to do that. So in some ways there is the silver lining. We don’t have to worry about that, because you know, I’m not going to get pregnant. So we don’t have to come across that, that sort of bridge really. So we were very thankful.
 
But it’s fine. You know, the family understood, because I did make the time to explain it to them, especially to my Mother, who I think that at the time I was cheated or you know, why did this have to happen? But when I explained it to her she obviously totally understands and is just glad that I’m okay and she obviously saw me in that conditions afterwards. So she wouldn’t to go through that again either. 
 
So on that side again just being very positive about it, and I think we both were day, well from the moment I signed the consent form to be perfectly honest yes, and very lucky because I’ve got nieces and you know, other children around me. 
 
But yes, I can imagine for s
 

Mandy had a follow up meeting with doctors a few weeks after her haemorrhage and hysterectomy....

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And tell me about the follow up. You said you had your six week follow up with the consultant?
 
Yes.
 
Was that helpful?
 
That was very helpful. Again [son] was fine. So that was not a problem. It was very useful, because what we did we went through what had happened. He felt that was very important as well. Which, you know, again very thankful for that and he was very open. He wasn’t my original consultant. They moved me from my original consultant to him. I suppose because they felt may be, you know, not that my original consultant let me down in any way and we certainly haven’t said that in any shape or form. It’s just one of those things. But they made the decision to swap consultants and I’m very pleased because he’s the one that saw me through it all.
 
But what was great about that was that I, I had questions. Because I’d had the six weeks to reflect on that. It was, you know, I made notes and I went in and we chatted. [husband] came in as well. Because again, I thought he needed to, if there was anything he wanted to say this was the time to try and sort it. And that’s when, you know, my consultant said, “Look you can call me at any point.” You know, “Even if its years down the line, you call me. And we can go through stuff.” 
 
I got my maternity notes about four years ago. So [son] was about two at the time. Number one for my study, and what I realised was when I went through the birth essay I was doing. I can remember a lot, and I can also, because [husband] was there a lot of the time he obviously then fed into part of the jigsaw I suppose. But I what I found very interesting about the notes is even though I did see them before I left the hospital, they were very kind, and you know, there was parts of it that they left with me, just to go through. It was good to see it again. And even though, the event was obviously quite traumatic and distressing and depressing at the time. It makes it more personal. 
 
So that for me that’s really reassuring. So emotionally that really helps to, you know, I’m sure things will crop up in the future. But at the moment, it feels you know, we understand it, and it’s not a problem.
 
 

Mandy had a hysterectomy after her first son was born. Their first year as a family was tough -...

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But yes, no it was tough and it was tough coming back because we had nothing ready, no nappies, no cot. I remember coming back on the Friday evening and him making up the cot, as we sat and had a cup of tea, because it wasn’t done, it still wasn’t done. By I think by that point I think the relief or the euphoria after it was immense, but obviously there’s a down side and I think for us as a family we’re very happy now, but I think there were times when I think it was still in the back of your mind always. so it was a very, the first year was probably quite a, I wouldn’t say a down year. We didn’t have more arguments or anything like that it was just very sort of mono, you just get through every day. But then you know, life has a way of just picking things up and we’ll probably after two, two and a half years things have picked up and once [son] started school we felt very much in a different place. But yes, I suppose emotionally even though you do get that sort over protectiveness. You know, we only have on child, but so do others. But I suppose there’s certain times when we’re probably more neurotic than normal if you know what I mean [laughs]. Very hard to judge but you know, there would be situations where oh no we don’t want [son] gong there because we don’t feel safe, or and [husband] also had that, which I felt was interesting. Because I thought it would be mainly me who was a bit more you know, can’t do this, but actually we both have that same sort of pattern. Not so much now, now we have to be sort of be aware, we’ve learned to let go and get on with things. But yes, I suppose for people that have gone through traumatic, you know, because it is that it’s the aftermath isn’t it. Just sort of picking up the pieces. Everything else is the same, no, we’re in this house, nothing has literally changed. It was, you know, just sort of life as it was, but I remember just feeling quite mono just not have any emotion really, not mad or happy or but now you know, you just sort of learn to go with the experiences and its fine now, but fortunately I didn’t dip into depression.
 
Did you worry about that do you think?
 
I think so. I really thought tomorrow I’m going to be depressed [laughs]. Because you know, it just, it just didn’t stack up that we’d been through all this. I’m very supportive and I suppose looking at the partnership between [husband] and myself I am the strong, you know, the strong confident one. And I almost feel guilty because I wasn’t there when he needed me. I was there, but I wasn’t you know, there, there. So that makes me feel oh you know, but he’s got a lot tougher so that’s a very good thing really.
 
 So from that point of view I think that was, that was the hardest. So once I started picking up on who I was again, I think it made things easier because then he could let go a little bit and not be the one who had to be the strong one, the tough one, you know. But yes, it was definitely interesting. It was a tough year, but then again a lot of parents have tough years as we know. Very lucky that we got through it, yes, a big argument’s sometimes on the way, but I suspect they would have happened anyway. 
 
 

Mandy felt disappointed that she was not able to have more children, but also lucky that they had...

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The family obviously went through a very hard time afterwards, because then what happened was the bleeding didn’t stop. The next day in the morning we were told that, you know, they had to do something, because you know, I was, I think up to that point I had something like 14 units of blood. Something like, in the end there was 22 units of blood and 14 units of platelets to help with the clotting.
 
So the consultants came in and this bit was I felt was very good in the way they handled it. Because they had [husband] and myself and then there was two consultants who were going to sort of look at it. They brought experts in which was wonderful. I’ve seen the notes that they obviously contacted other hospitals to find out how to deal with this. And then they drew out diagrams about what could happen.
 
So the first option was to brace the wound. Which is I don’t know what they use but something that sort of puts pressure against the inside of the uterus to try and stop where the bleeding is coming from, basically where the placenta had come away. That was where the bleeding was from. So that would be the first operation.
 
And then what they explained to me very clearly was that if that didn’t work it would need to be a sub-total hysterectomy. So again they explained it in full detail. The ovaries would still be intact, because I was like worried about is that premature sort of, you know, you know, the… I can’t remember what it’s called now, but meant that’s it. So I did think oh gosh, you know, at the age of 28 do I really want that? I obviously clearly understand that there would be no more children. 
 
But it was weird, I think because they’d made it so clear and we felt very supported and my husband was very supportive as well, that it didn’t seem to matter at the time because it was either that or you know, dying basically.
So I think we accepted that quite early on, and even now, we’re very lucky that we’ve got one. You know, we’ve heard, you know, since then we’ve been on other forums and stuff where people have you know, lost babies and then can’t go on to have other children. So we felt ourselves really lucky, so we were fine.
 
 

Mandy started to bleed shortly after her son was born. Doctors tried several options to stop the...

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I woke up about sort of 6 o’clock (pm) feeling the contractions quite strongly. And at that time my husband still wasn’t there. So I pretty much laboured on my own, which was fine actually. And I had the midwives come in, just to check me. And then the next thing I know is that I’m in established labour and in a delivery suite and you know, on gas and air and I have my baby. Okay he was delivered by ventouse. I was induced. I did have an oxytocin drip. But otherwise that part of it was quite straightforward. So apart from him obviously being in potential danger. Fortunately his APGAR score was very high as well. It was 9 to 10. So against all the odds of my being quite ill that week before, he did really, really well.
 
It was the complication of afterwards that was the problem. What they then found, because they didn’t know what to expect. This is what they told me in retrospect as well. The amount of bleeding. You know, it wasn’t necessarily gushing as such, but my husband’s remarks were, oh you know, again in retrospect. But he came in, not knowing the condition. Because I obviously hadn’t contacted him before, which in hindsight I should have done. The midwives hadn’t either. So the first contact had was the midwife asking me for his mobile and then him coming in. So he was just thinking “oh we’re having the baby early, great”.
 
So he went through the birth process as any Father would, not knowing what was going to happen. The complications then happened. So he remembers going out, making all the phone calls, telling everybody about you know, son’s arrived, everything’s fine, and then seeing me on the bed with tarpaulin on the floor covered in blood. So from a Father’s point of view quite traumatic and again you know, probably could have been handled better by myself and the midwives and the staff really in that, you know, he should have been pulled aside and just said, “Look you know, this could potentially be quite tricky.”

 

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