Key Learning Points
- Women and their partners appreciate staff giving clear explanations in non-medical language at all stages before, during and after the emergency:
- where conditions are diagnosed in the non-emergency situation antenatally, knowing what might happen helps women and their partners prepare and cope better afterwards
- during the emergency, repeated reassurance is appreciated
- being listened to and able to ask questions after the emergency is important for women
to come to terms with what has happened
- Partners/fathers can feel forgotten during and after the emergency:
- Frequent updates from any member of staff help them to feel less anxious and isolated
- Having another family member with them for support can help
- Knowing that staff have learned from a woman’s near-miss is reassuring for her
Understanding what was happening during the emergency, or what has happened after the event, was very important to the women who experienced a near miss, and their partners and families. It helped deal with anxieties during the emergency, and coming to terms with events afterwards.
Sarah had placenta praevia and needed a hysterectomy. She wished she had been given more...
Sarah had placenta praevia and needed a hysterectomy. She wished she had been given more...
Age at interview: 29
Sex: Female
Age at diagnosis: 24
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The way I feel is it was discussed, hysterectomy was discussed in the same ways it had been done on like my previous sections. Or the same way as you would if you had, I don’t know any kind of operation. You know, like I’ve had my gall bladder out and in that they tell you, you know, as well as having your gall bladder out, it usually goes to plan but there’s one in so many thousand who have a bleed or an infection or a complication or can have a nick in the bowel. Or, it was said in that kind of way. It wasn’t said in the fact that look if you’re having this the probabilities are that you’ll have a hysterectomy. And if you have a hysterectomy this is what you will expect. Which for me would have been much better than not knowing anything. And I literally I knew nothing. Because obviously I’m only sort, I was only 24. My Mum’s very young. No one in my family had had a hysterectomy. So nobody knew anything, nobody could help you. Because it’s quite a specific sort of thing. So for me it would have been much better if they had said, and whether people feel that that will give out the scare mongering thing. It’s better to be informed than ill-informed. If you don’t have to use the information you’ve given with than fantastic. Wonderful. Brilliant. That’s really, really great. But if you are one of the unlucky ones then you know what to expect. I mean the type of pain that I was in, I didn’t know if that was normal. Is that normal? Is it not normal? The way my wound healed, was that normal? Was that not normal?
The timescale of emergencies varied. In some cases, health professionals had time to explain their condition to women and their families so they were able to understand their condition before the birth of their baby. In other cases, emergencies developed so fast there wasn’t much time for explanations until afterwards. Clear communication and information is something that health professionals need to consider during the emergency, and in aftermath when they are caring for women during their recovery or follow up.
The importance of understanding: a case study
Alex and Kerry were both diagnosed with grade 4 placenta praevia. The information they received and their subsequent understanding was very different. Alex was kept in hospital for 8 weeks until her baby was delivered at 34 weeks. She said the way doctors explained her condition, and its risks, was excellent. It was like a “drip feeding process” which enabled her to process little things at a time. When she was interviewed three months later, she was recovering well and had not felt the need for counselling. In contrast, Kerry, felt that doctors did not explain the risks to her and when she started to haemorrhage in hospital, she was terrified. She later developed panic attacks, mostly focused around bleeding to death. She had counselling and was on medication.
Alex found it hard being in hospital for weeks, separated from her two year old daughter. But...
Alex found it hard being in hospital for weeks, separated from her two year old daughter. But...
Age at interview: 37
Sex: Male
Age at diagnosis: 36
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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.
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. How it worked.
Well they came to see me every day, 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 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 just always complain.
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 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 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 maybe 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 dinner one night, and he said, “I can’t stop you, but the risks are no
Alex was in hospital for 8 weeks with placenta praevia before her baby was delivered. She felt that being well informed by doctors really helped her understand why it was important to stay in hospital.
Alex was in hospital for 8 weeks with placenta praevia before her baby was delivered. She felt that being well informed by doctors really helped her understand why it was important to stay in hospital.
Age at interview: 37
Sex: Male
Age at diagnosis: 36
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And what was the value of being informed? Did that help you cope with it better or …?
Yes. It enabled me to understand where they were coming from really. Because you do sort of get, well surely this is a bit over the top, and I guess because the bleeds I had weren’t particularly big bleeds. You think, well, you know, I got here. If it happens again I’ll just come back. And… it was that one explanation from the midwife that said, you know, when she talked about the blood dripping onto the floor and then I think [doctor] saying the last patient he had who had a big one like this was, he said, “He’d been on that night, she said do I really have to stay?” And he said… “Well it’s up to you, I think you ought to.” And he said he went home, and before he got home he got a call, “Come back. She’s had a massive bleed.” And she’d lost half the circulation to her body or something by the time… So it’s those sorts of stories that you think oh well okay that makes sense. And you know, he said to me, “We probably see one grade four a year. You know, it’s not as if it… we’re…” You know, but you feel a bit guilty wasting public funds and a room and it could be… It was funny, they would do the hospital tours to the expectant parents, and I’ve obviously I heard about five of them a week and they were coming round, and as they walked past my end of the ward. “This is the ante natal room. You might have to come in, stay for a couple of nights if you’ve got high blood pressure and then you get to go home.” And if felt like you know, no it’s a lie, they keep you here forever [laughs].
Kerry felt doctors should have sat her down and explained the risks and dangers of her placenta praevia to her.
Kerry felt doctors should have sat her down and explained the risks and dangers of her placenta praevia to her.
Age at interview: 27
Sex: Female
Age at diagnosis: 25
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I think that they should have, the day that they diagnosed the placenta praevia I think they should have sat me down and told exactly what it meant, and the dangers and the risks. No one ever put a bit danger on it. But obviously I looked it up myself and realised that there’s different grades of placenta praevia. It can be marginal. It can be a little but it can be complete. And then when I read the complete I thought wow. And it just made me think little things like if this was years ago before they had scans, I would be dead. Because no one would know that that baby cannot come out any other way, you know, then me and the baby would be dead. Or they wouldn’t understand why I was bleeding and it just, it’s a scary thought you know. I do think we’re really lucky that we have got the medical things we’ve got today. But I just wish they’d have told me a lot more and the way they carried on, on the emergency, I thought wow it is serious. It was all the consultants were there. It was a consultant anaesthetist and I thought… so it is serious. And why did they… I sometimes felt like it was, I hated going back to the hospital with the bleeds because the midwives were so, “Put yourself on the bed.”, and it was kind of, “oh it’s her again.” That’s how I got to the point of feeling, “oh she’s back again”.
Kerry had placenta praevia. She was in hospital being monitored after having had a smaller bleed...
Kerry had placenta praevia. She was in hospital being monitored after having had a smaller bleed...
Age at interview: 27
Sex: Female
Age at diagnosis: 25
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How many weeks between when you went in and when the haemorrhage happened?
Two weeks.
Two weeks okay.
Yes.
And what information were you given during that time?
Nothing at all.
What was your understanding of why you were in hospital?
Basically from my own research on the internet, while I was actually sat in the hospital, that it was complete placenta praevia and from what I read up on all the web sites it was serious. It was, you can haemorrhage, you can die, early labour. It’s all documented facts and I was just wondering why me midwife had never made a big deal out of it or you know, no one ever said to me, rush to the hospital. A little bleed can become a big bleed. I just thought “I’ll be all right”.
I was in the labour ward. I just woke up, and I thought I need a wee, which is unusual for me. I just stood up and I just, I had to wee in the bed pan. They wanted to keep testing it and seeing if there was blood in it. Just when I stood up it was just, the floor, I could see just see red basically.
Okay, so what did you do?
I just leaned back onto the bed and grabbed the alarm and just, the midwife came in and straight away she just hit this alarm and it was just doctor after doctor and I do remember them doing a physical examination of me as well, while I was bleeding which was really uncomfortable. I don’t think she got that far in when she had just seen how much blood was coming out. It was just straight away the bed was just soaked.
Okay and how do you think the haemorrhage went on for?
I would probably say not more than half an hour. It literally happened and I was five minutes, within five minutes I was in the theatre.
Okay.
And it was, I just remember them pressing, and putting and messing about down there with like towels… While they were trying to sit me up, I remember having a midwife between my legs, and I can’t even, I wasn’t even embarrassed or anything. All I could see was just the blood, and all right it was on her gloves, and there were sheets and everything was just, and everywhere I looked it was red. It was so frightening.
And how did you feel?
I just felt scared, because I’d never come across anything like this. I had no understanding of it, and I just didn’t expect to be in there and then you hearing words, hysterectomy, and you get, I could hear her shouting what my blood type was, and the doctor, and then I had the anaesthetist tell me he was going to put me to sleep if I lost too much blood. And I thought maybe if I’d have known a lot more I could have mentally prepared myself, that yes, you can haemorrhage. This is what haemorrhage means and you might have to have a blood transfusion. You know, things like that, I didn’t know what happens when you haemorrhage. They never explained that if you haemorrhage, because I could have said then, well what would happen if I did haemorrhage and then remembering the main word hysterectomy and I thought that’s mine, that’s a woman, its, and I’m thinking I’m 25 year old. And it was just so frightening.
My partner, he couldn’t even come in. He fainted outside but he couldn’t… So my sister had to come in. He said he’s never been so frightened in his life. Ever.
Good communication
Several women described good communication with doctors about the emergency, particularly those who had a condition that developed more slowly so there was time for clear explanations and questions beforehand.
Samantha and her husband appreciated meeting with paediatricians who explained what would happen if the baby was born early. So when their baby went to neonatal intensive care at 29 weeks it wasn't a shock.
Samantha and her husband appreciated meeting with paediatricians who explained what would happen if the baby was born early. So when their baby went to neonatal intensive care at 29 weeks it wasn't a shock.
Age at interview: 32
Sex: Female
Age at diagnosis: 31
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And what did the paediatrician tell you? What sort of information did they give you when they came to talk to you?
They were very good actually. They told us about, you know, obviously they can’t speak in specifics until a baby’s born, but they, they gave us information about a baby born at 29 weeks gestation, you know, the main concern that we have is for the lungs. I’d had steroids already to already to address, you know, to certainly try and address that issue. They explained to us about some of the likely medication and machinery that, that you’d probably have to go on and you know, how they would sort of deal, deal with the baby in theatre and then take her away and that sort of thing. So, and actually that was really good, because when, I didn’t see her for quite a while, because they wouldn’t let me off of the delivery suite. But when my husband went upstairs and they were using terms like, ‘oh this is the CPAP machine’, he knew what that was and why they were using it. He already knew that and although it was still a big shock for him to see, you know, our daughter in that sort of situation, he did understand what everything was, and why it was there. So I’m really glad that we had someone come and speak to us actually, because, I would, I think otherwise I would have just been completely freaked out and you know, what’s going on, sort of thing. But because they’d talked to us about what you know, a baby at 29 weeks gestations is generally what their condition generally is, it wasn’t such a shock.
And actually the way they talked to us as well was, it was quite matter of, not matter of fact, but because they were able to say, “Okay, in the, if, for a baby at 29 gestation this is generally, these are generally what the problems were, are.” It felt like, oh well they obviously know what they’re doing, so it didn’t feel so scary I think. And luckily she was quite a text book case as well. She didn’t have any very major issues other than her prematurity and yes, I just, it just felt really comfortable that everything was going to be okay [laughs].
Mandy had acute fatty liver and doctors couldn't stop her bleeding. Good clear communication by doctors helped her and her husband to accept early on about why a hysterectomy was needed.
Mandy had acute fatty liver and doctors couldn't stop her bleeding. Good clear communication by doctors helped her and her husband to accept early on about why a hysterectomy was needed.
Age at interview: 35
Sex: Female
Age at diagnosis: 28
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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.
Anna developed septicaemia (blood poisoning) after her second son was born. She was put on antibiotics and doctors explained that if they didn't work, they would have to move to 'Plan B', a hysterectomy.
Anna developed septicaemia (blood poisoning) after her second son was born. She was put on antibiotics and doctors explained that if they didn't work, they would have to move to 'Plan B', a hysterectomy.
Age at interview: 22
Sex: Female
Age at diagnosis: 21
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All I can remember them telling me is they were going to try and fight it with these antibiotics and then Plan B. I can remember him saying “if not Plan B”, and then I asked about Plan B and that was it. I didn’t really get given an awful lot of information. But I don’t, I think if I had I wouldn’t have remembered it anyway.
Did he tell you what Plan B was?
Yes, that’s when he said; well we’ll have to give you a hysterectomy. Because he looked at me a bit shocked and the nurse said to me, the nurse was there when he said that and she turned round and said, that not many people ask about Plan B, because people can’t handle it. So she said that’s why he looked at you quite surprised. But I don’t, I just wanted to know. I’m glad I did because I had a day and a night to think about it, prepare for it, tell my partner, rather than it being like a “hysterectomy, boom, bye”. You know, I had time to sort of say to him, you know, probably this is what is going to happen. And everyone thought I was being negative, I knew, I knew, you see it was, I knew it was bad because you don’t get admitted to Intensive Care for nothing, but I wasn’t frightened.
Reassurance
Sometimes the obstetric emergency developed so quickly there was little time for explanations. Even so, women appreciated calm reassurance from medical staff. Natalie recalled that as her haemorrhage started the consultant took her hand and said, “You don’t need to worry, you’re going to be fine.”
When she started to haemorrhage (heavy uncontrolled bleeding) after her son was born, the midwife...
When she started to haemorrhage (heavy uncontrolled bleeding) after her son was born, the midwife...
Age at interview: 32
Sex: Female
Age at diagnosis: 30
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During, during the delivery itself she was absolutely great. I mean she was everything I wanted in my midwife. She understood what I wanted, was very hands off, very relaxed, made suggestions if she felt it would help, but it was entirely up to me. So communication up until that point was great. When it all kicked off I think they were more concerned about making sure I was stable. So initially there was pretty much no communication. It was just like, I think she did say to my husband, “I’ve got to press the red button. It’s going to get very busy in here, very quickly. But keep calm. It’s under control. You’ve got no need to worry.” So she pre-warned him about what was going to happen. So he said that he felt as reassured as you can be when you’re wife’s passed out next to you, about what was going to happen, and I do have some recollection of after the first, when they’d got their monitoring machines up and running, so they could check my stats I do vaguely recall someone sitting next to me holding my hand, and just saying, “It’s all right, it’s going to fine. Just they need to get some blood into you.” And I don’t actually remember all of what she said. It’s more a memory present of there being somebody next to me, kind of trying to reassure me. So there was after that initial flurry of activity, I’m fairly certain that there was someone with me, trying to keep me calm. Which I greatly appreciated. And I think it was actually my midwife. I think at that point, they had kind of let the people from upstairs, the main delivery unit had come down and taken over the case and I think she was sidelined, but her role was then about caring for my emotional needs, rather than my physical needs and they were there to look after my physical needs. That’s my understanding anyway.
Naomi felt a terrible pain and called the ambulance. Her consultant was there, rubbed her cheek and reassured her that everything would be OK.
Naomi felt a terrible pain and called the ambulance. Her consultant was there, rubbed her cheek and reassured her that everything would be OK.
Age at interview: 37
Sex: Female
Age at diagnosis: 35
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So I suppose going back on the Tuesday, I was on Facebook, [laughs] saying three more… I thought I was going to have an elective Caesarean because they wouldn’t have me have VBAC and chatting on Facebook and all of the sudden I just had the most awful pain like I’ve never known. Well it was the same as the urine retention actually. And I said to my partner, “Oh I think I’m in urine retention.” But I couldn’t move, couldn’t stand up or anything.
Luckily my gynaecologist had had told me, had promised me that she would deliver my children. So when the ambulance man came, I got them to ring her at home [laughs]. Which she advised to get me straight in. So I thought I was in labour, because I hadn’t really experienced labour.
So I was like yes, I’m going to get my VBAC and I was actually OK about it, I wasn’t traumatised or anything from it at all. I was quite pleased with it not knowing it was happening. The ambulance driver, I remember I couldn’t find the lift because he’d gone in a different thing, so they were panicking going round and round the hospital. Got me in and the gynaecologist was there. And she just took one look at me and she just said, “Crash now.”
Now, so obviously I just had to let them put everything on me. But because I knew who, who was delivering her and she sort of rubbed my cheek and said, “I’ll make sure you’re okay.” I was okay. Actually it was really important, because with [first daughter] I didn’t believe that she was my baby at all, because I’d never seen her born, and I was completely traumatised from it. Whereas this was a lot worse and I wasn’t and that’s why I’ve got lots of photos of the birth, because they wanted to make sure that I would know that [third daughter] was my baby coming out of me. So it makes gruesome viewings, but I like them.
Clarity of language
Several partners we spoke to pointed out the importance of doctors using clear language when speaking to them. Craig’s wife was in intensive care after an emergency caesarean to deliver her twins. When he saw her there he assumed she was going to die, and doctors were just waiting to turn the machines off. “I actually thought she was dead.” When he later spoke to doctors he said, “I don’t want to hear medical talk, you know, you’ve used big long words that I have no idea what they mean. Is my wife going to be OK?” But being open and honest about the situation was also important.
Rob felt that communication with health professionals about his wife's placenta praevia was 'sugar coated'. He would have preferred to know how serious her condition might be.
Rob felt that communication with health professionals about his wife's placenta praevia was 'sugar coated'. He would have preferred to know how serious her condition might be.
Age at interview: 34
Sex: Male
Age at diagnosis: 29
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They said, from what I can remember, they said that the placenta that should be at the back or at the side or something is now covering the exit hole but because she had a grade four, not only was it covering that, it was covering, it was up all over the front. So basically rather than being at the back and sides where it should be, so it was covering the exit and its come right over the front. So, there was no way she could have the baby naturally, but also there was no way that they could get the baby out, without going through it. Because it’s just in the way. And then obviously placenta is the bit that keeps the baby in and it’s all full of blood and substance, you know, so it’s all a bit complicated and it would take a bit longer than the ten minutes it would normally, normally do. But they didn’t seem like it was going to be a massive problem. It’s an issue and something they’ve got to be careful with, but it wasn’t like they said, look this is heavy stuff, you know, this could potentially happen because of this. You know, they did say, “It has gone through it, you know, we have to be really careful blah, blah, blah.” But you know, I don’t honestly remember them saying, this is serious you know, this could happen or that could happen, you know, they just said, “We have to take a bit more care, and it might take a bit longer, you know, she might lose a bit more blood than previous.” But it was all a bit…
You see now I’m a guy who likes to be told straight you know, whether it be good or bad news I like to know exactly what’s what. I don’t like it all sugar coated. And I kind of like the feeling of you know, in hindsight looking back now, it was all a little bit don’t you worry, you know, it might be a little bit this, and a little bit that, but it was all a little bit kind of, a bit sugar coated really. Not, you know, if they’d just come out and said, “Look when we go through, the potential is there that she could die.” Or, “You could lose the baby.” Or, you know, “She’s just going to bleed and we might be in there for two hours.” Because she was in there for nearly two hours in the bloody operating room in the end. You know, if they’d have said that, you could kind of get your head round it.
When his partner was critically ill with amniotic fluid embolism (amniotic fluid enters the mother's blood stream), James just wanted a clear 'meat and potatoes' explanation of what her chances were.
When his partner was critically ill with amniotic fluid embolism (amniotic fluid enters the mother's blood stream), James just wanted a clear 'meat and potatoes' explanation of what her chances were.
Age at interview: 43
Sex: Male
Age at diagnosis: 40
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And then kind of being escorted out of the theatre with [daughter]. Was it [daughter], or was it one of those wheel along kind of things or… and me being taken to this room and being sat there with this nurse. And, it’s so funny, because this would have been really clear at one time. I just remember being in this room and then someone, I can’t even remember if it was the consultant or not. For some reason in my head, I’ve got a bloke and a woman both coming in and talking to me, and it might have been that a nurse came in and then the consultant. There was a female came in. Kind of saying a bit of what the problem was. I don’t remember what, what they said the problem, but I can remember me saying, I remember it being kind of you know, very vague medical speak, and I actually had to say at the end, “So there’s a chance she won’t make it?” I think I just wanted a meat and potatoes kind of conversation. I didn’t want some fancy words. I kind of, “What, so there’s a chance she won’t make it?” And, and they actually said, “Yes.” I can’t remember if I said, “What is the chance… the situation.” I remember, I mean my head, sort of it was 50/50 as if that was kind of what I’d been told. That wasn’t something I had worked out, because I didn’t have enough information for that, so I think they would have said, it’s sort of 50/50. But that, that information only came because I’ve asked for it.
Rebecca had placenta percreta and then developed a blood clot in her leg. She would have liked more information about what had happened to her from doctors.
Rebecca had placenta percreta and then developed a blood clot in her leg. She would have liked more information about what had happened to her from doctors.
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I think it could have been better. I think instead of being there and you’re not really aware of things a hundred people popping in when they are doing different rounds and things, telling you snippets. I think if they had been informative. Even, I know it’s really basic, but giving you hard, hard copy information. This is the condition you have. This is what it does. And then later on when my husband came in I could say, “Hey, you know, I had placenta preavia and percreta and this’s happened and certainly going, “Well I had something where it grew out and they tore my bladder.” And you know, you’re just, you’re catching smithers, you don’t understand hospital doctor lingo, and they do get enthusiastic. They do get carried away expecting you to know their terminology. You don’t know their terminology. You don’t want to ask questions because you do feel you sound stupid and you’d be surprised at the number of people that do feel that way. You want to feel like I’m not some person who doesn’t know what you’re talking about. You want to feel like you know; I’m not some person who doesn’t know what you’re talking about. And you know, whereas they presume that I knew everything about placenta preva. I actually didn’t know anything about placenta praevia. All I knew was that it was a low lying placenta. I didn’t know that it could attach to a caesarean scar and that these are the consequences. You know, I never even thought about that. I think if they if they can give you, be a bit more informative and follow up that, instead of having lots of different people coming and telling you different things. Because you’re scared, at the end of the day I was petrified. I was absolutely scared.
Keeping fathers informed
Several partners described being left wondering what was happening to their wives/partners during the emergency.
Mark feels he is 'a pretty strong guy', but that other men could have been very affected by watching his wife's emergency.
Mark feels he is 'a pretty strong guy', but that other men could have been very affected by watching his wife's emergency.
Age at interview: 41
Sex: Male
Age at diagnosis: 37
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So dealing with that particular time period, what do you think could have been done differently or better?
I think someone could have explained what had happened at that point. Why we were in that situation, why there was the need for the crash team. Why she had been whipped away like that. Just to fill me in. I didn’t think so much of it at the time, because I was so wrapped up in the emotion of having a new born child in my arms. But afterwards I thought, there was space there, to actually involve me a bit more in what was going on, and it wouldn’t have taken too much effort, given that they were all ready and able to dash in and you know, eight or ten of them there, at the crash, to keep one of them behind for a few minutes, just to make sure that I wasn’t less sturdy than I was. Because I’m a pretty sturdy guy, I think, I like to think I am. So I could withstand it, but someone who was not quite as robust as me, might have really gone to pieces at that point, not knowing what was going on. You know, I just sat there and I put my faith in the service I think and thought well if anything is going to go wrong they will tell me. As long as it’s no news is good news kind of thing, well that’s what I was thinking at the time.
Doctors discovered Rebecca had placenta percreta when they started her caesarean operation. Her...
Doctors discovered Rebecca had placenta percreta when they started her caesarean operation. Her...
Age at interview: 42
Sex: Female
Age at diagnosis: 40
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Anyway they started the surgery and suddenly started shouting that its placenta percreta and it just all went panicky in there. And you know, when you’re lying there and it all starts to get to be… I mean my husband didn’t know what was going on and I didn’t know. But they were quite efficient. I can’t fault them on that. It was just a very scary experience.
They literally covered me up, they said, “Oh we’re not…” I was the whole time worrying about my daughter. I didn’t know it was having, you know, it was open… They said, “No she’s okay. She’s still in the womb. They haven’t you know, opened that up yet.” But they’ll just cover me. And they rushed me through the corridors to the other operating theatres.
And that was manic, and I remember lying there. My husband standing there thinking, well he thought he could still be part of it, and there was a lot of shouting and they were saying, “Get out everybody.” They were sending people out. And then the higher surgeon of the gynae obstetricians department, he was there. I remember the faces of these people and you know, obviously they put me under full under anaesthetic and that was what as far as I know what was happening.
My husband unfortunately, they sent him out, under not such pleasant terms, with a student who sent him to some waiting area and he didn’t know anything. They found him in a couple of hours’ time to tell him that he had a daughter. That was all. He spent the whole day literally wandering around, because I only came out of the operating theatre at six. They didn’t contact, tell him, find him, they didn’t fill him in, nothing. They didn’t even tell him his daughter was born at 12.31. They told him at 2 that she was born and they didn’t tell him that she didn’t breathe for ten minutes. They didn’t tell him anything.
So he my husband is an Israeli and his English is perfect and that but he does have, you know, being in a different country, and it’s a scary thing when you’re wife… he had nobody there with him. So he found it really hard.
Being listened to
Several people stressed the importance to them of the conversations they had with staff. It was important to be listened to, not to be treated as a number and feel that staff actually cared about them. Communication after the emergency was over was also important for women. It helped them understand what had happened and start to come to terms with it.
After her haemorrhage and hysterectomy, doctors came to talk to Alison like a 'normal person' and answered her questions honestly. It was important to know that she mattered and wasn't just another number.
After her haemorrhage and hysterectomy, doctors came to talk to Alison like a 'normal person' and answered her questions honestly. It was important to know that she mattered and wasn't just another number.
Age at interview: 32
Sex: Female
Age at diagnosis: 30
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They were pretty good actually. And they were just good at talking to me, about, like a normal person, rather than you know, and answering my questions honestly. When, when my son was a couple of days old, yes, the head anaesthetist at the hospital came to talk to me, because there was a big meeting that afternoon and they were going to be discussing my case, and he wanted to come and talk to me and find, just have met me, and let me know they were going to be talking about me, and find out a little bit more about what had happened and, and I just, those little things like that, doesn’t take a huge amount of time out of somebody’s day, but it actually just makes you feel that you’re important, you know, you matter that you’re not just another number, or a statistic or whatever makes you feel value. You know, like you, not valued because you’re a patient, but do you know what I mean. Its, that they’re not just doing their job because they have to, that they actually care.
Sophie had a PE and a post-partum haemorrhage. Things had dragged on for so long she was...
Sophie had a PE and a post-partum haemorrhage. Things had dragged on for so long she was...
Age at interview: 38
Sex: Female
Age at diagnosis: 36
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Could I just add something I just remembered having a conversation with my obstetrician and, and this was sort of the, after I’d had the haemorrhaged and he’d obviously been along, I mean he was around for the first pregnancy, the second pregnancy. He kind of knew what I’d gone through. And he said, “We’ve only had this, this combination of problem once in eight years” or something like that. I was so exasperated by it all and I said, “Did she get better? Did she get better?” And he said, “Yes, she got better. She’s fine. She’s okay.” And I think that was the bit where I just thought oh God, you know, somebody has actually got through this before and you know, it’s been hard, but they’ve got through it and that’s the kind of thing. I’ve got, am I going to get better? I suppose that was the thing that, by the end of that whole thing that had happened, I was just like is this just going to go on forever or am I going to get better, and I just needed a bit of reassurance really. They may have been walking round thinking, we’ve dealt with all the very serious issues and we’re not worried about her now, but, but emotionally you think, well no this keeps happening. What’s going to happen next.
So it was, you know, I can look back at it and laugh now, but I remember at the time I just thought, “What do I really need to ask this man?” And I just thought, am I going to get better? It just sort blurted out at him. But it was just yes. I mean these people, the doctors have got all sorts of records about what happens to various people and stuff, but they hold it themselves and obviously there’s confidentiality to that. But you know, it’s knowing that somebody, this has happened, but it is rare. Okay it was eight years ago, but how did they deal with that? Has anything improved? Will they deal with, you know, will they learn from this experience? Given that they couldn’t diagnose it literally it happened. I suppose you know, there are those reassurances really, that you like to think that if you’ve been through something really traumatic, that somebody’s going to actually learn from that and help in the future. Even if it is rare.
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