Conditions that threaten women’s lives in childbirth & pregnancy
Good practice that makes a big difference
Key Learning Points
- Personal touches from individual staff can make a real difference to how women and their partners cope with the emergency and recovery
- Transfers within the hospital can be difficult and are made easier for women by:
considering both their critical needs and needs as a new parent
use of a single room where possible
- Reviewing their notes and/or a discussion with their consultant after an event can help women make sense of what happened
- Women find GP support once they are discharged valuable to help them return to normal life
- Explanations, often repeated, of what is happening are helpful to women and their partners at all stages of the emergency and recovery.
We interviewed women who experienced life-threatening emergencies during or shortly after pregnancy, and some partners/fathers. Across the care pathway, women and their partners identified a number of straightforward examples of good practice that made a big impact on how they experienced and recovered from these severe morbidities.
In the emergency
Women’s experiences of the emergency varied greatly. Women and their partners understood that during the emergency, the focus of medical staff was to save their lives and the life of their baby. However, a number of them gave us examples of thoughtfulness from professional staff that made a real difference to how they felt at the time.
Jo was pregnant with her first child. When she started to bleed at home, she called an ambulance. As soon as she arrived at the hospital, emergency staff put a Doppler to her bump to reassure her the baby was OK. Jo’s experiences also highlight the difficulties women may have consenting to emergency interventions in these situations.
Jo started bleeding at home, an early sign that her placenta was breaking away from her womb. The crash team were waiting for her at the hospital. Her immediate thought was 'who's dying'?
Jo started bleeding at home, an early sign that her placenta was breaking away from her womb. The crash team were waiting for her at the hospital. Her immediate thought was 'who's dying'?
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So I went and I said to [husband]… you know, “I’m bleeding.” And he said, “Oh shall I ring the labour ward then?” So he rang the labour ward, and the midwife said, “Oh well, just make your way in, but if it gets worse phone an ambulance.” And by this stage I’d never heard of placental abruption. I didn’t even know what a heavy blood loss in late pregnancy would be an indication of. I had no idea.
So as [husband] sort of went back to go, well he had to go back to get his wallet together and phone and stuff to drive me into the hospital, I said, “Ooh actually I think I’m bleeding a bit heavier. Could you phone an ambulance?” And although I am prone to a little bit of neurosis. It would be very unlike me to say, “Phone an ambulance.” Because I would normally, “oh no, I don’t want to trouble anyone. I’ll make my way in”.
But, so anyway, they turned up about fifteen minutes later, took me downstairs to the lounge where they did a sort of very quick examination and said, “I think we’ll, we’ll take you in.” I still had no idea that what was going on was so serious. Even though I was in considerable pain, by this, by this stage, it was agonising, continuous pain. And so I lay in the back of the ambulance and I remember the paramedic, she kept saying to me. “Do you feel like you’re in labour?” “I don’t know. I’ve never been in labour before. I haven’t got a clue.” “Do you feel like you want to push?” And I said, I was clear that no I really, do not want to push, and it was. I’m still amazed even now. I think it must be an instinct or something that I knew that pushing would be a very bad thing to do. But I knew that panicking would be a very bad thing to do. And ordinarily, I quite like a bit of a panic, but I just, I just knew that I had, I just had to stay calm.
The ambulance seemed to take forever to get to the hospital, because they got lost coming out of the village. So we trundled along and eventually got there and everything was still quite calm in the ambulance, the paramedics hadn’t put their siren on or the lights on. So I just thought oh this is just a routine journey.
Anyway as we pulled into the entrance of the hospital, I obviously passed a massive blood clot at that stage and then the ramp got stuck on the back of the ambulance. They couldn’t get me out very quickly. But even so I was just sort of lying there thinking, okay, something, something is happening here. And as soon as, the minute that they got the ambulance door to work, as soon as the wheels on the trolley hit the ground, then there was sirens and an awful lot of people, and running down the corridor. Like, well it was like something off Casualty really, and I heard someone shout, ‘Crash team’.
It sounds quite dramatic [laughs]. At the time I was thinking crikey, crash team. Whose dying? Is it me? Am I dying? I don’t feel that bad. I mean I’m in quite a lot of pain, but I don’t think I’m about to die. You know, is the baby okay?
And, and then they cut my clothes off. I remember getting hold of my crocs and throwing them across the room. And waving a consent form in front of my face, saying you know, “Do you consent to you…” Well I don’t even remember what the consent form was for, but, and they put the Doppler on my on my tummy which was, I’m so glad they did that, because then they made a point of really saying to me, “You can hear that can’t you? You can hear him can’t you?” I was like, “Yes.”
And the next thing I was be
A number of women noticed that small personal touches from individual doctors and midwives had a big impact on how they coped.
Julie was admitted to hospital with pre-eclampsia. She felt very reassured by the care and attention the midwife gave her overnight, but contrasts this with her very different experience of the postnatal ward.
Paula developed amniotic fluid embolism after giving birth to her daughter. She was very happy with the care she received, but explains how important it was to her that her daughter was dressed in clothes that she had brought in with her. In the confusion of the emergency this didn’t happen, and thinking about it still upsets her, even now that her daughter is three years old.
Fathers are often left wondering what is happening to their wife/partner while staff are fighting to save her life. We were given examples of small acts of kindness that helped them cope during the anxious waiting period. Michael’s son was delivered early after his wife developed HELLP syndrome.
Michael was grateful to one of the doctors who brought photos of his son out of the operating room for him to see, before he was allowed in to meet him.
Michael was grateful to one of the doctors who brought photos of his son out of the operating room for him to see, before he was allowed in to meet him.
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So at what point did you leave her, when she was put to sleep or …?
Yes. So I got dressed up in the blue outfit and got to go into the operating room and then stayed with her for… until about the point, you know, where she just sort of fell asleep and then I left and all the rest of the doctors all seemed to come in.
And there were a lot of doctors?
There seemed to be, yes, I was surprised, there seemed to be, when I left the room there seemed to be at least ten people in there, and I got the impression that you know, one or two more might be coming in as well, so I didn’t, that didn’t panic me, but I was sort of surprised that we needed to have that many doctors or medical staff in there for the actual operation.
And how long… where did you go during…?
I went back down the hallway to the preparation room that we’d been in for the previous four or five hours.
Okay and how long did you have to wait there?
It was probably, twenty, twenty five minutes and one of the doctors had come in and told me that everything was okay. He was a sweet old man, he’d offered to take a camera into the operating theatre to take some photos for the birth. So that was nice. So he came in, initially after may be 20 minutes and sort of said. “Everything seems to have gone okay.” And I think he brought me one photo. No he brought back my digital camera, that’s what he did. He brought back my digital camera so I got to have a look at a couple of photos of our boy on the back of the camera, and then, I think he went away again. And so I spent some time looking at those. He came back with a printed out photo of our boy. So I think they must have had another camera that they took a photo of, and then he went away again, and then he came back a third time. So this was probably getting close to 40 minutes after I’d left the operating room. He came 40 minutes later saying that there’s, the family down the hallway’s missing someone. So got to walk back down the hall way and went in to see my partner cuddling our baby boy. So…
Dean's baby was in NICU while his wife was in Intensive Care. He established a routine spending time with each. His daughter was very well cared for and the staff were very supportive.
Dean's baby was in NICU while his wife was in Intensive Care. He established a routine spending time with each. His daughter was very well cared for and the staff were very supportive.
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And then I decided to take a walk down the corridor and go and see [daughter], you know, and she was pretty good. She was really good actually. I didn’t pick her up, actually, I didn’t want to pick her up. Not because I didn’t want to. It’s because they look so small, they’ve got tubes sticking out of them and little hat on all that shit on. And obviously I was touching her through the holes and everything.
But I wanted to get into a routine. So I was basically spending two or three hours with [daughter], back up at the hospital, back up the corridor to Intensive Care and just back and forth. They found me somewhere to sleep in Intensive Care obviously then. Because they were refurbishing the ward, what do you all it, where all the parents stay, or whatever they’re called. In the special care baby unit, I had a bed there. You know, and they were feeding me. They were looking after me. Letting me have showers, you know, it was great. It really was good.
I made friends with basically the whole hospital. And they found me like, not park benches, but somewhere no one comes down here. You know, you get some kip for a couple of hours. I was a vagrant, bags and everything. And like bags of food, they used to give me papers in the morning, you know. And they looked after obviously [wife].
And two days after [daughter] was born, and [wife] obviously had that, obviously the loss of blood and everything, she had to go back in and have another operation to remove the packing.
Okay.
And to me that was worse, because they had to re-open, and because they had to re-open her, what they had to do was basically thicken her blood again, which is dangerous, because obviously that causes clots, you know, so that was that was really, really bad and that was 8 o’clock in the morning she was, she was going down for that. So my brother in law, [brother in law], with me, he turned up, we had something to drink, but I didn’t have something to drink,, and we waited for an hour and a half, [name],obviously she was the anaesthetist, she turned up and said she was perfect, she was good. They said they was a little bit worried because obviously they had opening her up, if it had been like a normal blood, and they obviously had to thicken it up a little bit, you know. Because Warfarin obviously thins your blood.
Yes.
So she’s had some cuts herself, and it doesn’t stop bleeding. You know, so, yes, so.
Did they explain all that to you, all about the blood clotting and stuff, what was going on or did you …?
Yes.
They explained quite clearly.
She was in Intensive Care.
Yes, okay.
You know, and that Intensive Care was something else. It’s like I said to you, it’s like a space ship. There was someone at the bed, or at the end of the bed all the time. And obviously buttons and God knows what else is behind her. They was just great people. They were just amazing people. That is the best hospital of all. It is, not just, obviously they saved [daughter], which I didn’t know until ten days later, that they’d kept from me, was that she was actually born with septicaemia.
Right.
I did ask questions after a few hours, why did she have like a drip in her arm. And they said, “That’s just normal standard practice, if they come in Intensive Care.” Which it probably is, but
Mike refused to leave his wife when she was she went through to theatre to stop her bleeding and deliver their stillborn daughter. He was comforted by the anaesthetist.
Mike refused to leave his wife when she was she went through to theatre to stop her bleeding and deliver their stillborn daughter. He was comforted by the anaesthetist.
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Terrifying to be honest. Because I knew that we’d lost our daughter, but I could tell, I was there for the Caesarean of our first daughter, and there were slight complications in that as well. But I knew the way Joanna was in that first operation, how she was deteriorating, and I could see it happening again. So I was just looking at Joanna really. You know, and although the hassle that was going on around us, I remember we were just kind of looking at each other weren’t we? I know Joanna was kind of saying quite a lot about looking after our first daughter and things like that.
The one thing she said to me was, “Don’t leave me.” And it was the anaesthetist consultant that came round and I said, “I’m coming in with you.” She was like, “Yes, that’s fine, that’s fine. It’s not a problem.” And then they kind prepped Joanna ready for theatre, and before we came out the anaesthetist wanted to speak to me. So she pulled me up. She said, “When I said you could come in, you are going to come in, but then you’re going out. So Joanna thinks you’re going to be there, but when she falls asleep you’re going to come out of the theatre.” And I remember my exact words to her were, “Then you’d better call security because nothing is going to drag me out of the theatre.” And she went, “All right, okay.” She said, “Well…” She said, “Well it’s not going to be very nice.” And I said, “I’m not leaving Joanna.” I said, “I’ve already lost my daughter. I’m not losing my wife.” And… it was a good five minutes or so, while they were just sort of getting a conversation between the consultants, and they agreed that I could come in, but they would put a big screen up. And I said, “I don’t really care what you do. I just want to be there for Joanna, because I couldn’t look her in the eyes, after it, and her saying, how was it and everything else. And also yes, I’ve lost my daughter. I know she’s no longer with us, but I didn’t like the idea of my daughter being born and no one being with her.”
So I kind of muscled my way in really and then, it was like, for a Caesarean really. My daughter was born. She was next to me. I was holding her. But at the same, because I could hear what was going on, knowing how poorly Joanna was, and it wasn’t until I was in that operation how close I was to losing her. Even they were surprised as to how much blood she’d lost. They didn’t have enough blood on standby, so you know, there was a massive kind of rush to get more blood in.
I, at some point in there, I obviously thought I’d be coming out of there and not only having to explain to my daughter that she hasn’t got a sister, but you know, she hasn’t got a mummy as well. And the realisation of it was just immense really. But as I say, the one person who took an interest there was that consultant anaesthetist. You know, I just remember this one kind of scene really. This one moment where I had my arm round Joanna. Obviously Joanna was out for the count, and I was holding my daughter, and I was just, you know, a mess basically and it was the anaesthetist who actually put her arm round me and she was stroking Joanna’s hair as well. I then ten minutes later we were out and it was kind of all changed. But the only thing I insisted as that my daughter stayed with us, and that was allowed. And she was kind of bathed and things like that, but again this was all when Joanna was asleep. And again that’s one of the things really that we’ll never ever get to experience really, is that one of those things where for our first daughter you did experience really,
Transfer in the hospital
Being transferred out of surgery or critical care to less acute areas of the hospital was often a difficult time for women. Paula had amniotic fluid embolism and highlighted how she had needs not only relating to being critically ill, but also to her role as a new mother.
There were important examples given where the sensitivity of staff eased the transfer. Several women described being offered their own room for a night or two, so that they could be private as they started to recover from their near miss.
Follow up
Some women wanted to meet with doctors to understand more about what had happened during the emergency, to piece together the missing bits. Others found it helpful to go through their notes. It helped them understand and come to terms with their experience.
Karen had a haemorrhage and hysterectomy and applied to see her notes from her time in the general hospital, and intensive care. She found going through them very helpful.
Karen had a haemorrhage and hysterectomy and applied to see her notes from her time in the general hospital, and intensive care. She found going through them very helpful.
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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.
Mandy had a follow up meeting with doctors a few weeks after her haemorrhage and hysterectomy. When her son was two she also asked for her notes which reassured her and helped her really understand what had happened.
Mandy had a follow up meeting with doctors a few weeks after her haemorrhage and hysterectomy. When her son was two she also asked for her notes which reassured her and helped her really understand what had happened.
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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.
Post-natal support
The support that women were offered after they were discharged from hospital varied greatly. Women who were given support by their GPs valued it as they recovered and tried to get back to normal life.
Lisa was given fantastic care and support by her local GP once she came home after her...
Lisa was given fantastic care and support by her local GP once she came home after her...
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Lisa' He’s fantastic. He visited me every day when I got out of hospital. Here at the house. He’s just been amazing. And I, one day we’ll pay him back, because he’s gone beyond the call of duty, without a doubt. Well they all have at the surgery actually. They’ve all been amazing. But it’s hard getting out, and the first time you have to go up to the surgery on foot, because everybody knows and you go in and they go, “Hi. How are you doing?” So oh…
Yes, luckily that’s subsiding now. All the people in the reception area would be like [whispering noises] they’d all be looking and they’d say, “Oh let me see the baby.” Oh. And you get that when you go to playgroup. This is a small village, really small. So everybody in this area knows that I’m the one that nearly died in childbirth. And that’s really hard.
Partner' It’s so small that actually knew what happened to her before we got home. And that’s a fact.
Lisa' He was going up the local shop to buy provisions and they were going, “How is she?” And he was like, “How do you know?” You know, and it was like really, really strange. But that’s a small village for you. But it was concern. It wasn’t nosiness, it really wasn’t nosiness. They were really concerned. We had cards from everybody. And flowers delivered and everybody was really worried. Because they all knew us a bit before. Obviously we hadn’t lived here long. We’d only been her eight, nine months before I gave birth. So, but everybody knew us as the new couple and, they were all really, really shocked when they found out what had happened and sort of seeing me going up and down in a wheelchair and stuff. So they were all really worried.
Some women did not feel the postnatal support was as good as it could have been.
Clare developed a DVT after having her second child. She was given incorrect information about whether she could continue to breastfeed while taking warfarin.
Clare found having to suddenly give her son a bottle very upsetting. Her GP did some research and discovered it was safe to breastfeed her son on the medication she was taking for her DVT.
Clare found having to suddenly give her son a bottle very upsetting. Her GP did some research and discovered it was safe to breastfeed her son on the medication she was taking for her DVT.
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But it turned out that I was given wrong information about breastfeeding. Which, and that’s the one thing that I’m really quite cross about. Everything else, I think, well I couldn’t have done anything about it. It was just really bad luck. But it’s the one thing I feel quite cross about.
Because what happened was we had to stop on the way home. I gave [son] one last breastfeed thinking I don’t know when I’ll ever breastfeed him again. And we had to stop at the supermarket and get formula. I had to ring [husband] and say, “Can you sterilise bottles?” Luckily being second time parents. I’m glad it didn’t happen to be first time, being second time parents we had bottles. And I had back up formula, just in case breastfeeding didn’t work out. So luckily they were out the loft and they were kind of ready I suppose.
So I told him to sterilise some or bring some formula and we had to start him on formula when I got home and it was really… It was heartbreaking actually. Sorry.
Take your time there’s no rush. There’s no rush.
I think the thing was, that was really awful having to come home and I had all these drugs to take and inject myself with, and suddenly I had to introduce a bottle to him, and he didn’t take it very well. He was very good in that he took the bottle, but obviously it’s a different feeding mechanism to breastfeeding. And he really struggled and he was clearly taking a lot of air in. So he was sort of very unsettled. He was screaming and uncomfortable and in pain all night. I was in agony because of my leg. And… basically for two days we had to bottlefeed him, until we could sort of sort out whether I could carry on breastfeeding. But I kept expressing milk to keep my milk supply up. And I’ve never been good at expressing. It’s never really worked very well for me, so, but I wanted to do it.
I had a brilliant GP who I saw a couple of days later. I talked to her about it. And I phoned the health visitors as well because they run a breastfeeding clinic round here. So I had my GP and the health visitors on the case looking into if I could breastfeed on warfarin. So…
Yes, so, it turned out I could breastfeed on both the Clexane and the warfarin and I needn’t have gone through this. Because we had two days of, it was awful enough anyway, but two days of me trying to express and him not really, struggling with the formula etc. So… and I think that could have been all avoided. That made it all much worse. And then… when we found that I could breastfeed it was great, but he went a bit frantic, so when I went back to breastfeeding it was all he wanted to do. Which was very tiring for me, and I got very sore.
To cut a very long story short I ended up getting thrush in my nipples and in my left breast. It took quite a few weeks to sort it all out. So in the end on the advice of one of the health visitors who came to see me at home quite regularly for a while, considering what had happened I used nipple shields, because it just got so painful and every time I tried to stop using them, I got blisters and I don’t know whether it was because of the warfarin which made my skin more sensitive. I think you’re much more prone to bruising and things with warfarin. So I don’t know if that was it, but I’ve had to use nipple shields ever since basically. I’ve never been able to go back to breastfeeding him without.
Sophie was discharged from hospital after having a pulmonary embolism and a post-partum haemorrhage.
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Communication and understanding
Good communication with health professionals, during the emergency or afterwards, helped women and their partners understand what was happening to them, and make sense of the experience afterwards.
Both Alex and Kerry had placenta praevia. Their contrasting experiences highlight how good communication was important in helping them understand the risks of their condition.
Alex found it hard being in hospital for weeks, separated from her two year old daughter. But doctors explained well why it is vital to keep close to an operating theatre if you have placenta praevia.
Alex found it hard being in hospital for weeks, separated from her two year old daughter. But doctors explained well why it is vital to keep close to an operating theatre if you have placenta praevia.
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Is that what he explained that first day when he came to see you or was that later on?
That was later on. They did it very well. They explained the gravity of the situation but not in a way that would have complete… I mean every time, it was almost like a drip feeding process. And I mean, it might not work for everyone, but it worked well for me, because it enabled me to process little things at a time, and you know, the paediatricians came and explained what would happen if the baby was born now, at that point. The anaesthetist came in and explained what he would do, and how the decision would be taken as to whether it would be general anaesthetic or whether it could be done by spinal block and you know, if the extent of my bleeding was massive, you know, whether I’d have to be heavily sedated and in Intensive Care for a number of days. And I remember they did explain from day one the possibility of a hysterectomy and all of that sort of thing. So…
It sounds like communication in the hospital was really good.
Excellent, yes.
Can you just describe that a bit more to me?
How they communicated with me?
Yes. What, what, how it worked.
Well they came to see me every, a registrar or a consultant came to see me every day. I mean some days I felt really lonely in there to be honest. Because they’d come in, any bleeding. No. Fine. And they’d go. And I didn’t require any, anything else. I didn’t require. I mean they listened to the baby every couple of days. But I didn’t need that, if I was in the community, I wouldn’t be having that, or the blood pressure checked every day. So there were some days when I thought, oh I could be anywhere. And they were incredibly busy there. But when I needed things, you know, it was immediate and it was spot on and it was compassionate and it took into account the whole family. They were amazing. And on my never ending list of things to do is to write to the chief executive, just, you know, people always complain and I just…
We had one incident where I felt a doctor had been, had come into the room and hadn’t introduced himself. So I had no idea whether he was a doctor or a cleaner. And that was the only time, the whole time in hospital that I’ve had any, any sort of remote, I mean, you know, the portering staff used to bring me a bacon sandwich every morning. Well, you know, I got a bit bored of their breakfast cereals. They were, I shouldn’t say that, I shall probably get them into trouble. They were outstanding and, you know, as I said before they sort of drip fed information which I found really helpful.
When there were bigger bleeds it was reiterated, so they went through the same procedure again. One time, it was, I think it was two, it was about two days before I ended up delivering. And a girlfriend was over there at the time, and this same consultant who gave me the first explanation was the one on call then. And he went through it again, and he drew diagrams of how they could do various hysterectomies and he left the room, and my girlfriend burst into tears. I said, “What’s wrong?” And she said, “This is so awful.” Oh, you know, you may be get so blasé about it, but you know, the anaesthetist were great, they all, you know, they explain things very clearly. Matter of factly, which is what I needed. And then when they felt I was becoming a bit complacent then they would term things perhaps more strongly. But you know, ultimately everything was left down to me to you know, to the point where I wanted to go out for d
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