Finding out what had happened to them, and coming to terms with the seriousness of their illness, and what a narrow escaped they had had, was often emotionally very difficult for women. For many, trying to understand what had happened to them and make sense of their experiences has been a long, emotional journey. As one woman explained, the emotional impact is powerful and takes a while to overcome. “It’s a bit like throwing a stone in a pond and the ripples just, the initial ripples are quite strong and then they sort of dissipate.”
Realising what had happened
Often it took women a while to realise the full severity of what they had been through. This may have been because they were unconscious, in intensive or high dependency care for hours or days, or because it just took a while for it to sink in. Cate, who had a blood clot after her third baby, said, “I don’t think I realised at the time how much of a near miss I’d had.” It was only when she went back to see the consultant, a few weeks later, that Amy realised how much blood she had lost during her postpartum haemorrhage (heavy uncontrolled bleeding after birth). The consultant was concerned she might feel a bit low, “because ‘when you nearly die it can be a bit traumatic’. That was the first time anyone had said how serious it had been.”
Alison T is married with 5 children. She is a housewife, her husband is a sheet metal worker. White British.
So going back to what happened while you were asleep. I mean how did you gradually discover what had gone on while you were …?
Not until I was back in the labour ward. I was, wasn’t told, for I think a few days that I’d had a hysterectomy. Not that that bothered me in the slightest. I wasn’t upset about that. It was explained that they had to do that to try and stop the bleeding. I lost nearly three litres of blood which an awful lot to lose. So that didn’t worry me at all. And I think it was just gradually I was told.
I didn’t know how serious the baby, you know, how ill she’d been either. And I think I didn’t really know that until I came out of hospital. So, and it was my husband that was telling me bits and pieces when I was ready to hear it.
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Lisa, a 35 year old instrument maker, with one child. She lived with her partner. White British.
Lisa' And the lady said to me, she was wiping my brow and lovely woman, the people in ITU are faultless angels and I suppose they have to be, but, she said, “Oh, you’re awake. Wonderful.” She said, “Oh you gave us a terrible fright.” And I just remember looking at her, “Why?” [Small laugh] And she said, “Do you know what, you were nearly a goner?” And I said, “What do you mean?” And I looked at Wayne and he was like, I’ve never seen, I don’t ever want to see that face again. Just looked bedraggled [sighs]. And I could see he’d been crying a lot, and he was smiling really inanely at me [small laugh].
And I said, “What’s happened?” And he, he said, “She’s right, you nearly went.” And I just didn’t believe what I was hearing. I was just looking around thinking, am I asleep? This is really, really strange. And I had loads of monitors on me, and heart monitors and goodness knows what else, so I thought, right something. I’d looked at myself and my, I remember looking at my arms, because I tried to pick something up, I think I tried to pick a cup of tea up or something. And I thought oh my arms were really, really hurting. And I put the cup back down. I said, “What’s wrong with my arms?” And I picked them up and looked at my arms and they were black. Both of them were absolutely black. Both sides, and my hands were really….
Partner' The swelling was amazing.
Lisa' … really, we took pictures of it because we just couldn’t believe it. Why you want to memorize that I don’t know, but I just couldn’t believe it. I’d never seen anything like it, and they were so sore. And apparently all my veins had collapsed and they couldn’t find a vein or anything, and then I had a drain coming out of my tummy, and stitching down below and oh it was just so, I’ve got to laugh because otherwise I’d just go completely mad, but it was, I’ve known pain like it. I just laid there thinking what the hell has happened? This isn’t right. What’s happened? And nobody can explain and they just said, that, “You haemorrhaged really bad, three times. Had to do this hysterectomy. Tried to do everything we could to stop it.
Understanding what happened
Many women we spoke to explained how important it was to fully understand what had happened to them. It helped them fill in the blanks in their memories of the events, and also helped them come to terms with their illness. Alison was interviewed a couple of years after her haemorrhage and hysterectomy and said she felt another follow up meeting would be helpful. “I’m actually at the point where I would like to go over it one last time, maybe just to get closure, that I can piece it all together in my mind.” Cara became “obsessed” with discovering what had happened to her after she had a haemorrhage and hysterectomy with her first child, “I basically became an expert. I researched everything.” Karen was keen to piece together the blank patches' “I just wanted to fill in some of the gaps for my reference.”
Mandy is a marketing officer, married with one son. White British.
And tell me about the follow up. You said you had your six week follow up with the consultant?
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.
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Sarah is a photographic processor. She lives with her husband and three daughters. White British.
It’s going back and reading some of my notes. I did do that. I went back and read sort of what time things happened and it’s not so much, it’s getting, it was bits and pieces. I’ve got bits and pieces from kind of like everybody. You know, just when people were like talking to me. But its, it’s really surreal losing time. It’s the most, even though it’s only a short, for me it was a short period of time. But it is really weird going to sleep on a Monday and then waking up on a Wednesday. Having had all this major thing happen to you. But its little bits.
Later on my husband talked to me a bit more about sort of time lines of things. But mostly from, from my notes, from the hospital, you know. But still there’s lots of blanks, you know, because not everybody knows everything. And talking to some of the midwives as well about it its. It was… you know, it was like the most, like awful thing that could have ever happen to me at the time.
What would you have liked from him?
I would have liked to have had some kind of, or been involved in, I know from hearing through the grape vine that there was some kind of debrief that happened. That that my case was kind of obviously looked into and sort of, they kind of had a look at what had went wrong. And I would have liked to have been involved in that. I would have liked to have had, not even a say I would have just liked to have known what had happened, because I still don’t know to this, to this day, quite what happened. I just kind of know just kind of bits and pieces and that’s what really frustrating is like there’s bits and pieces in my notes, you know, I know that, I know how much blood I lost. I know that I had a few injections of like Oxytocin I think it was to try and get the womb back down. I know I was open for a lot, I know I was in theatre for a long time because of the time I went in, and the time my Dad said I came out. So I know, and I know that another surgeon came in from one operation he was doing and he came in, but that’s only because that’s what bits and pieces. I’ve never had one person sit down with me and say, “Okay, so you went in at this time. We started to do this, and then that went wrong. So we did this and then this happened. We did this and this happened. And then finally you had a hysterectomy and we did this.” That’s never, ever, you know, really been made clear for me. Which again has, I think that hinders part of the healing process because you do think, you know, how the heck happened? You know. So I think that a major sort of thing. I think the fact that I had no information on hysterectomy, that was like a major thing.
Seeing their notes
Women sometimes asked for copies of their notes to help understand what had happened. They felt ready for this at varying times, some almost immediately after they went home, others years later. Even though sometimes there were bits of information missing, on the whole, going through these notes, either on their own or with a medical professional, was really helpful. Some recommended going through them with someone who wasn’t involved in their care.
Karen is married with two sons, one now a teenager. White British.
So I wanted to ask you about your notes. Did you see your notes after, and at what point did you see them?
I was provided with my intensive care notes by the intensive care department and then I applied to receive to receive my notes from the hospital. I think you had to pay something like £30 or something and that was probably about four, five months afterwards. I think I explained earlier, that I had lots of blank patches and I wanted to try and piece those together and try and fill in some of the holes, and I felt that by having my notes it might help. I wasn’t looking for anything to sort of pin blame or anybody or anything, because I didn’t feel that way. I’ve never felt that way at all. But I just wanted to try and fill in some of the gaps, for my reference.
And were they helpful?
Very helpful. I mean some of them like the ICU notes, I mean, I had to go through them with the, with the follow up sister to explain some of the terminology. I mean I understand a lot more of it now, but you know, when you first read it, it’s like reading another language. So there’s a lot of, because they’re having to type in stuff quite quickly as and when things happen, and so they use a lot of abbreviations and that type of thing, medical abbreviations as well, so … Yes. Yes, it was definitely helpful to have the notes, to refer back to them.
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Naomi is a psychologist. She has three daughters and lives with her partner. White British.
And at what point did they tell you that that’s what you’d had?
Oh not for ages. Actually it was just mentioned in passing. It wasn’t you have Ogilvie’s or you had Ogilvie’s or however you say it. It was somebody just mentioned it, and I thought, oh is that what it was, you know, rather than, saying, this is what it were.
And that fact, that kind of understanding of how serious it was, who explained that to you and when was that explained? Was that something you’ve worked out by yourself?
I’ve worked it out by myself. And by the fact that they basically were dancing around me afterwards and I went and read my notes last year, which did actually help. And I can’t fault them for that actually. Then I was like, “Oh there’s too much stuff there.” And she was like, “No I’m going through it bit by bit.” And they did. It felt like they were doing nothing. But they were doing something. But obviously that wasn’t communicated to me, and it was, they perceived with the psychiatry thing, they perceived my comment, which was, “I don’t want to be here.” As something completely different, and actually that took me down a different road to completely the way I should have been going. And the fact that now they do all know about it. And there’s books and stuff on it there shows to me how serious it was, but I have just probably worked it out for myself and also people’s with jokey comments. “We don’t ever want to see you back here [laughs] ever again.” Or, the care assistant had been there for all three of mine on the ward, you know, just sort of saying, “Bloody hell woman.” You know [laughs] “It was bad enough with the first, you were a pain in the arse with the second, and a third look at you” [laughs].
So and it did actually help to go back on the ward to read my notes, to face it. Because it sounds silly but I was beginning to want to avoid it. And I know that the best way to face it, is to face it, and they did want, they did say to me, “Do you want us to read your notes somewhere else?” And I said, to them, “No. I want to read it on the ward.” And that, I’m glad that I did that, because that actually made it not so scary. Because it becomes something different in your head.
And who went through your notes with you?
The ward manager.
So you’d recommend that?
Oh yes. But not straight away. And I mean I went through, when I was, after I had [second daughter] I was trying to decide whether to have a VBAC and I went through… after I had [daughter], I went through my notes quite straight away, because I was told that’s what you do. And it traumatised me more, because there was yet more dates of birth and they’d got the dates of birth wrong because the clocks had gone forward, the hours of her birth, it was all… and I, so I felt that bad I just didn’t know when she was born, how much she weighed or anything. Ask me how much the other two weighed and I couldn’t tell you but for some reason it was important for the first. And it was the wrong thing to do.
Then I went through them again with different people who weren’t involved and realised actually I could have had a natural birth if they’d held their nerve, but they weren’t going to hold their nerve with me. And hindsight I suppose is a good thing. And it could have a different outcome I supp
Making sense of their life-threatening experience
Coming to terms with such a life-threatening experience can be very difficult. The memories of the traumatic experience, and realising what a narrow escape they had were difficult to understand. Samantha said that even though she was warned she might develop pre-eclampsia (high blood pressure), she never really fully grasped what that meant – “I hadn’t considered it to be something so dangerous.”
Alison is an accountant, married with one son. White British.
So on the whole you found that consultation quite reassuring did you?
Yes, and it was nice to be able to talk about what had happened from a medical perspective, away from the immediate event. I mean, she was very good at, she did talk to me several times while I was in hospital about what had happened and why it was necessary. But it’s quite, I think, because you’re living with, trauma sounds quite dramatic, but you’re in turmoil at the time. You know, you’ve just been dealt this huge blow that you’re not going to be able to have any more children, and biologically of your own. Or you’re not going to carry any more children of your own. And you’ve had, and you’ve been constantly told that you are very, very poorly. And so you’re dealing with that huge piece of news and trying to deal with a new baby, and feeling physically quite rubbish. So it’s really hard to absorb it all and take it all in and I don’t know that I’ve necessarily internalised everything that happened even now. Because you just, you forget things and so it was quite, it was really good to have that follow up appointment actually, to just, and to just be able to go through it again.
Several found that the “what might have beens” really preyed on their minds, others were haunted by the memories. Anna, who had a hysterectomy after developing septicaemia said, “Night times I would think about it… why did it happen? How has it happened?”
Alex is a solicitor, married with two children. White British.
Yes, it was hugely emotional coming, leaving. I can remember just getting to the waiting room and just bursting into tears and then getting into the car and having to sort of we’ve made it, we’ve made it. I can’t believe we’ve done it. We’ve done it.
And you know, I came in in September and all the leaves were on the trees and it was spring or early autumn, but it felt like spring and came home, and while we were in special care it was one of the really bad dumps of snow and I had to walk with my snow boots to sort of get to hospital and all the staff had been snowed in, and the season’s had changed and the Christmas lights were up and it was, you know, and I thought I’ve not driven a car, I haven’t eaten out, I haven’t you know, done anything normal for so long or been on my own which was really. And that was a long time before I was on my own. I think that was when I went to get my hair cut and I thought. I mean you’ve been in hospital and in a bizarre way that was a very lonely thing, even thought people are around you all the time. But, to physically not be encumbered in any way. It was a very, you know, you come home and things were actually in the right place and that’s not how I would have done it [laughs]. So, I had to get a grip. But it was lovely you know, being in, and it was a really special Christmas. It was a very intimate Christmas but it was you know, you are a lot more grateful for what you’ve got [laughs].
And has, you sort of touched on, on sort of whether people sort of move on. Have you kind of thought about counselling or kind of anyone to help you?
Yes, we have talked about. I think it probably would be really useful, because it’s the sort of thing where you do feel a bit ungrateful talking to other people. And you know, I keep in contact with some of the girls from special care who have got a lot more poorly babies than we have. I mean [second daughter]’s absolutely fine. So you feel a bit self-indulgent talking about it to people like that and you know, I mean, they will always be someone worse off. I think it probably would be really helpful, especially for [husband] I think, because men don’t tend to talk about it, and you know, I got, I got the sympathy and I got the oh this and that. But it was sometimes it was, people would say things like, “Oh you must have been so bored.” And I’d think you really didn’t understand. Yes, I was. But gosh that wasn’t [laughs] what made it hard. It was that, and I, constant state of anxiety and that, I don’t think that went until [second daughter] had reached her due date, got over that first illness in, so probably really only a month ago, that sense of anxiety. Obviously it’s not as heightened as it was while I was in hospital, but it’s a long time to live with that feeling of. Oh my gosh. And I don’t think at the time I voiced it in my own head. It’s not now until I think I could have died. She could have died. We both could have died, and even now saying that, I feel slightly melodramatic saying it [laughs]. You sort of think gosh, you just should be grateful, but…
I mean I guess four months is really not very long.
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Anna lives with her partner and two sons. White British..
Yes, last year, was so much the process of it. The what had happened to me, things I’d gone through, you know, because it wasn’t even just like the operation, it was everything I went through in hospital, you know, intensive care, it’s not a nice place to be anyway, so … you know, I had to make jokes, because I had like a urine bag, I had a bag in my bum, I had two drainages. I had all sorts, and you know, you’ve got relatives and stuff coming to see you, you kind of have to make jokes about it. Insider you’re embarrassed and it’s hard to do, you know, when you come out of hospital, I just like I just feel so embarrassed for myself and things like that but I didn’t have a choice, but I think that was hard, the helplessness, thinking about pain, because I can still remember the pain now, and like… remembering… I got told as well, that if I’d have been left an hour, an hour more upstairs, I’d be dead now. So, I don’t know, I think it was because the septicaemia had kicked in already. Yes, so that’s hard, because obviously then start to think, well what if I hadn’t have woken up? How would they know I was dead? How would they know how to help me? And the fact is I just would have died. Nobody would have known because my partner would have come up and just like, “Oh she’s sleeping, bless her.” Do you know, that’s scary. You know, you think I’d been glad that I woke up, you know, and the ambulance and the fact that you know, things torture me, like “Why when I was going in the ambulance, why didn’t I ask for [younger son] to come?” You know, and the fact that [younger son] was in serious danger himself, because I’d been breastfeeding, putting that bacteria into him. And so he had to get treated as well. And like, like now I just think, “Why, why didn’t I just scream and say, “Get my baby with me”?” What, you know, what was, you know, and I punish myself for that, but I wasn’t in any fit state to even know about what was going on. And the brain plays tricks on you I think, because you know, you know I think to myself, why wasn’t I terrified? When they told me I had to have an operation, why wasn’t I..? I had to have a needle put in my neck and I was awake, you know, the size of the needle, you know, it was a big needle. And I think now, I just, I think luckily I just let them do it. I think now if anybody came near me with a needle like that I would, I’d go mad. But I just let them do it, and like for me, it’s really weird thinking that it’s me that was there, because I just so wasn’t. I didn’t think I was going to die. And that was scary because I was so calm. How can you be so calm when you’re faced with death? How? I don’t understand it. Looking back now I think why wasn’t I panicking? Being taken to hospital, being taken in the ambulance. Why wasn’t I panicking? They were using all these big words, you know, that I vaguely knew because I’d done the course at college, so I vaguely knew what they meant. And I knew what they meant, like they weren’t good words. Like tachycardic and stuff like that. A raised heartbeat I think. No I had to have a scan on my heart. Well I had to have all sorts of stuff done. They put a catheter, catheter the wee one, put it in, as soon as I got into hospital, into accident and emergency. So it was like all these things. Why wasn’t I panicking? Why wasn’t I in bits? But I think, you just don’t think like that, your body just, just goes into like a survival mode or something I don’t know. But that, that worried me a lot, like why wasn’t, why wasn’t I scared? Being faced with that. I’m scared now. You know, I’m scared now for me back then. What? You can’t…I can’t make sense
There can be continuing sadness and feelings of grief looking back, especially for women who know they will never have another baby. As Sarah said, “You are grieving for children you’ve never had, for experiences you’ve lost.” Debbie had a uterine rupture during the birth of her second daughter. She said that every month that went by she felt better, but “I think I will always feel sad about it.”
Anniversaries could also stir up emotions. Several women described how difficult their child’s birthday could be, because it was also the anniversary of their traumatic experience.
Alison is an accountant, married with one son. White British.
Then when it got towards his first birthday, I started to feel quite anxious and just really, I’d gone back to work when he was ten, ten and a half months old as well. So going back to work and leaving him for the first time, and everything else was quite. I did everything all at once I think, and I’d actually done some fund raising for the hospital as I went back to work and so I was in touch with one of the midwives at the hospital and I mentioned to her that I was starting to struggle leading up to his birthday and she put me back in touch with the same counsellor and I saw her a few more times, that’s how actually, and it’s strange, I thought I would have needed more support immediately after the event, but it was actually a year after that I felt that I needed more help. But I think that it just brought feelings out that I’d just bottled them up. I’d kind of packaged them away and said, that dealt with, and I hadn’t worked through my feelings, I’d just pushed them to one side and said, I don’t, that’s fine, that’s okay. Put a smiley face on and got on with it [laughs]. And it worked short term, but then it came back to bite me when I was least expecting it as well actually and so I struggled quite a lot around his birthday, which he really helped me to go back and think about what had happened and talk about, talk about the things, and really uncover the things that were bothering me. The things that I hadn’t even realised were issues really. She helped me to kind of talk those through and get to a spot where I could identify why I was feeling the way I was feeling, and, and also make me realise that there’s no shame in feeling upset about what happened. And that if other people have a problem with it, then that’s their problem. But, and so now, it’s good, because now I just say if I’m feeling a little bit down and someone will say, “Oh just think about what you’ve got.” And it’s amazing how many people say to you, “Oh but just look at the gorgeous son you’ve got.” As if, and then I would feel bad for thinking but that’s not enough, because he is enough. But it was almost as if, because I was still feeling bad, despite thinking of him, that he wasn’t enough to make… and I’ve now got to the point, where I say, “I’m feeling down about it, but that’s okay. I’m going to allow myself to feel down about it, or cry. Because that’s what I need to do, to get it out of my system. And I find it just being like that and not suppressing how I’m feeling means it’s over and done with, so much quicker than, than if I squashed, squashed the feelings and they just hang around for ages. So...
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Anna lives with her partner and two sons. White British..
It was sort of like I had to reason with myself, and it took, it took the first year. It really did and like once the first anniversary had gone it just feels like now I don’t. It feels like it just takes, it’s a year healing period, and that’s what I feel, that for the first year every month on the date [younger son] was born it would be [younger son]’s nine months, [younger son]’s, you know, [younger son]’s two months, [younger son]’s three months, [younger son]’s four months, oh it means the operation happened on this date. And on Christmas Eve, I was really, I got really upset, a couple of months before Christmas thinking that, how am I going to cope with, with the, you know, I’m just going to end up breaking. But I didn’t. I was really just. I just thought to myself, oh this time last year I was in so much pain, and rather than feeling down about it. I just felt happy because I wasn’t in pain any more. I was with my family for Christmas and it was just so nice. And we had a quiet Christmas together and although I can’t get that last year back, it’s just one of those things that happened and it’s not… The thing about it is you can’t change it. There isn’t really much point in torturing yourself. You know, last year I was happy to torture myself but you do just kind, you do, I mean what I’ve been told like I had to have therapy, and I’m still having therapy and stuff like that to help my brain process what happened. But I’m not ashamed to admit it because it’s hard, it’s hard to accept something like that. And, you know, I thought I was okay. Deep down I mean that I wasn’t and then it just got to a point where I just felt like I was going mad, and I didn’t, I didn’t know what to do with myself. I just, I needed, I need something, but I didn’t know what. But it was just because my brain couldn’t process, I couldn’t accept it. And I still struggle accepting stuff now. But if I wake up and I know I’m having a bad day, I’m having a bad day and I know I’m allowed to feel like that and I don’t punish myself for feeling like that. And I think that’s important. People shouldn’t, people shouldn’t feel bad, you know, because not many people go through things like this. So you, there is no book. There is no rule book, and people shouldn’t make people think like that. Because it’s not fair.
Despite the difficulties of getting over the emotional impact of the emergency, women often talked of the needing at some stage to put it behind them, otherwise it could overwhelm them. Anna described making a conscious decision to be positive, even though this was not easy.
Anna lives with her partner and two sons. White British..
He finally came at 10 o’clock in the morning and it was just like… that feeling I will never forget, of him, you could see how grateful he was. I mean in his eyes you could see how serious it was. How serious it had been for all of them. My Dad, everybody. You could see when they saw me, just how, you know, I sort of saw from them you know, and they told me that people even up in Cornwall had heard about my story. And that they were asking about me. How they were getting floods of phone calls, floods of text messages from people who didn’t even know me. People were talking about it in like garden centres, stuff like that. And people were like oh I know that girl. You know, and it was like a really big thing. And I just sort of made a joke about it. You know, I’m a celebrity and all this sort of stuff and I kept positive. Because when, when on the Intensive Care they give you like an hour for lunch, like when you have to be on your own, and I think that’s when they do like, when they sort of sort all the patients out. You know, when you’re in Intensive Care you tend to like have all sorts of tubes and stuff coming out of everywhere. So my partner had to go home and I remember thinking about, I’ve got a choice now. I can quite easily let this consume me or I can just be positive and go for it, and don’t, don’t let it eat me up. Because it will kill me off if I let it eat me up basically, because you can’t change it. So I decided there and then to be positive about it. But it doesn’t mean to say any of that was easy. But that was my decision.