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 is a teacher, married with two children. White British.
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.
Natalie is a software consultant. She is married with one son. White British.
And for me this whole period seemed to go for a really long period of time. It felt like hours, that this was going on and they were, you know, so many people around me trying to do stuff, take blood pressure, put needles in, compress, they were doing compressions on the outside, compressions on the inside and then all of a sudden it kind of stopped and they were like, “Okay she’s stable.” I think that was obviously after the blood. I must have had a couple. I think I had two units of blood and they’d gone in and my blood pressure was back to normal. They’d stemmed the bleeding and it was like, right, the consultant, he was very sweet actually. He took my hand, and he said, “You’re going to be okay. You don’t need to worry. You’re going to be fine.” And I think he did the same to my husband actually. My husband was a bit of a wreck and then one by one, people started to leave the room and then there was just my midwife and I think two other people just kind of observing my stats and making sure I was okay. And what clothes would you like to put your son in?
Age at interview:
Age at diagnosis:
Naomi is a psychologist. She has three daughters and lives with her partner. White British.
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.
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.
Julie is a research and performance manager for a local authority. She is married with one daughter. White British.
I mean I think it is reassuring knowing I’ve got a very, very good community midwife. I mean she was an older midwife. I mean I’m not saying she was old, but I knew she’d got that experience and that skill and you know, you’ve all got to learn haven’t you, I’m an ex nurse myself, so I know you’ve got to learn on the job, but I felt very safe with her. And I had a midwife that we were with overnight, and I felt completely safe with her. Even though things were going wrong, I felt safe and I trusted her, I completely trusted her. And that made it a lot better because I knew she knew what she was doing. I just got that sense from her, you know, and she was just so… She’d just got time for us, she barely left us. For probably twelve hours she was there with us the whole time. And that made a real difference to us. A real difference. Because we felt, not valued, not valued, that’s the wrong kind of phrase, but we felt that she cared, and I think that really made a difference.
Whereas when you go up to the post natal ward, different ball game completely. I got shouted at for not breast feeding properly and I am thinking you’ve got no idea what I’ve just been through. You’ve got no idea. And then the fact that the midwife was probably about nineteen didn’t help and I just thought, you know, use your skills. I’ve just gone through something really horrible. Don’t shout at me. I don’t want to be shouted at, and especially not by somebody that’s half my age. I mean it really upset me and made me cry. Because I just thought, “don’t, you’ve not done this, I have, you know.” They’re all different aren’t they.
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.
Paula is a university lecturer, living with her partner. They have one daughter.
And really odd things like we lost, and it doesn’t matter in the scheme of things, but my baby stuff that I’d packed for her to wear, just disappeared somewhere, because like my bag had gone God knows where in the whole process, and so the little outfits that I got for her, just gone. That was actually the thing that upset me the most because I got these photos of her from the baby unit dressed in some strange clothes and I thought but I picked out these outfits where have they gone? And of course nobody knows because it’s all been so chaotic. But it was like, they were for my child, you know she’s wearing this strange clothing that I haven’t chosen. And it doesn’t matter, it really doesn’t matter, because she’s being looked after but I still to this day think where the hell did those things go you know, because it was just something that I’d planned for and it just wasn’t there, you know? And I think that was the thing that, you know, you can’t control everything, that’s the biggest thing about giving birth, but certain things you’ve planned for and then when that’s taken away from you, it’s like suddenly that little thing becomes so big to you, you know, because even when you get a picture she’s wearing some bizarre clothing that you haven’t chosen for her, you know, I mean it just, it was like an added insult you know, after what had happened. And you know, I was still, I still couldn’t to this day understand somehow somebody couldn’t have said, “Oh it’s really important. That the things that this Mother’s chosen actually end up with her baby, because if I hadn’t have been ill that’s what would have happened I would have been able to dress her and you know, it just didn’t happen, and it’s almost those little things become enormous emotionally, you know, when you just try to hang onto something that’s familiar, you know, and the child that you haven’t even met properly yet isn’t even wearing the clothes that you’ve chosen for it, you know. I think that was really, really odd because that was the thing that you know, sparked me off of, how little control I had over the situation.
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 is a website manager. He and his partner were expecting their first child. White Australian.
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…
Age at interview:
Dean is a sheet metal worker. He is married with 5 children. White British.
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.
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.
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 …?
They explained quite clearly.
She was in Intensive Care.
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.
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
Age at interview:
Age at diagnosis:
Mike is a police officer, married with one daughter. His wife was expecting their second daughter. White British.
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.
Paula is a university lecturer, living with her partner. They have one daughter.
I mean I suppose my over-riding feeling was afterwards that there’s always got to be a balance of the medical care and the fact that you’re also you know, a new Mum, that I understood completely that their priority was, you know, I had nearly died, and their priority was to work out what the long term impact of that was. I understood that from a clinical point of view. But I did feel that there was this kind of gulf in understanding of, as well as being a patient with these medical needs, I was also a new Mum and so I had, you know, you know, even the tedious things like, you know, wanting to still try and be able to breastfeed. I had to push for that, to say can somebody get me a machine? Can somebody show me how to do this? You know… and because I’m fairly bolshie that did happen. But again, had I been even more unwell or not as bolshie, I don’t know whether it would have done. Now it still didn’t work out for me, but in other circumstances it would, it could work out for somebody. So it’s those things you shouldn’t really have to fight about they should be part of the package that says as well as these clinical medical needs, there are also these things that you would normally be doing about you know, almost the midwifery things. You know, they kind of went out the window.
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.
Natalie is a software consultant. She is married with one son. White British.
I don’t think so really. I really don’t think so. I was very happy with the way I was treated. I think had I been in a general ward in the post natal with six other women in a bay I would probably feel very differently. I think I was very, very fortunate to have had a private room. And I felt for me that was important to allow me the space to recover. So if I did want to have a weep, and I think I’m fairly certain now that I must have wept that first night for half the night. Looking back I’m fairly certainly I did. And I don’t know if I would have felt able to do that in a ward full of other women and I think that was very important for me to grieve the labour that I didn’t have, if that makes sense. Although I had a great labour. It was very quick, it was over and done with. I wouldn’t say the pain was unbearable. You know, all of that, it didn’t go as I imagined. For the end I think you have to grieve. You have to go through that process of getting over that. And I think the private room sort of allowed me to do that in the first 24, 48 hours because I was in there two nights and I managed. I was luckily enough I kicked off, they tried to kick me out the second night and I kicked off because the only reason, one of the reasons I’d made the decision to stay was on the condition I could keep in the room. And then at 8 o’clock that night they tried to move me out. Luckily I kept it. If that had happened if I’d been in a general ward I think I probably would have felt very differently and how the care, how I would have liked the care to have changed was if women are having these experiences that are traumatic then they should be afforded the privacy to recover in peace really. But obviously constraints, medical, you know, funding constraints don’t always make that possible, but it’s nice to put that down as a wish.
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 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.
Age at interview:
Age at diagnosis:
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.
Oh I’m trying to think. I think it was about three months. It, I was for the first week that I was discharged, I had to see a midwife every day, and to have my blood pressure checked after a week the midwife discharged me and I had to go to my GP four weeks after that to check, to have a check and then I was going every four weeks, and at about three months they were happy, you know, that my blood pressure was pretty stable. And took me off medication. I have had it checked a couple of times since, and its, its generally, generally fine. It’s slightly on the high side but it doesn’t need medicating.
Okay and have you had any follow ups at the hospital?
No I haven’t. What, when I was discharged my consultant said to me, that were we, would we consider having any other children, which at the time I had no idea really and she said to me, “You know, before you even consider having another child, have your GP refer you back to me and we can, you know, monitor you, from the very, you know, from the very early stages of conception and so as to try and…” I suppose if I have a problem with the blood pressure to, to try and tackle that at earlier stage. So that if I did develop pre eclampsia again, you know, hopefully it would be at a much later stage. Because I think, from my understanding is that I, that its usually something that about quite later on in pregnancy and I was only 29 weeks gestation.
I had my six week post natal check. Which was fairly kind of, I guess perfunctory, you know, she sort of said, “Are you okay?” And I said, “Yes, I’m fine,” [laughs]. So there wasn’t a lot of sort of delving into what had happened and why and that sort of thing. Yes, there hasn’t, there hasn’t really been a lot of follow up for me, at all, but you know, like I said, I do feel that if I wanted to, you know, I can go back, I can go back to the, to the consultant and discuss.
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.
Tell me a bit about the GP and why she’s been so..?
She has been in constant contact with us. She if I do need to have a chat and things I can go and I speak her. She reassures me if things, or she’ll check, I might say can you check this out or whatever. I trust her 101 per cent. So she’s just there, they’re just available. There’s three little… it’s a doctor’s surgery. They have three GP’s. Everybody knows everybody. And, it’s fab in that respect. It’s not a big one where you’re… Its personal, it’s like going back to the fifties really or something it’s nice. It’s not particularly, you know, all up to date and all guns blazing, but that’s not what we need as a family. We need someone that knows who we are and I can say x y and z and they know what it’s about and that’s what I like. So my GP, I mean when I was in hospital they would ring up for updates and midwives and stuff would come and say, “Oh you’re GP’s been on the phone. And she sends her love. Hopes you’re okay.” You know, and that’s made it, the feeling that when you get out there is a support out there. Things went wrong. And when I’ve gone there and gone, “Oh.” You know, this has happened. She’s tried to help me. It could be diarrhoea tablets, or anti diarrhoea or if I’m constipated, or if I’m not. Everything’s all, she tried to sort all that out with me as well. So I’ve been very, very lucky that they, and they communicate and support me around that. So it’s been really, really good.
Age at interview:
Age at diagnosis:
Lisa, a 35 year old instrument maker, with one child. She lived with her partner. White British.
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 is an occupational therapist. She is married with two children. White British.
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.
Sophie' But when I was back, I kind of got, I got a lot of questions about how I was and stuff but I didn’t get any offers of physical support and help, and I said, “Look I’m really struggling is there anybody who can help. You know, just coming in cleaning or you know, helping me with the girls or whatever?” And they said at that point, they said, “No.”
Tom' The health visitor said no there isn’t. Not unless you want to pay somebody.
Sophie' Yes, she said, “For situations like this there isn’t.” And I couldn’t understand that, because, because I was still at risk. I still had a PE. And I said, “Well what happens if I’m on my own with the girls and I have a heart attack? Is there, is there anything that we can do to reduce the impact on them if that were to happen?” And they just came up with nothing really. And after I’d had the haemorrhage I then asked again didn’t I, about help. And they said, “Oh there’s this charity called Home Start…”.
Sophie' And I said, “Oh great, great, that would be great. Whatever they can give. Whatever support.” Because I had to go back to hospital every week to have my bloods checked because my blood wasn’t coming down to the right levels as they’d hoped. So that meant I had to go back every week and that happened for another three months I think. And during that time I couldn’t really get to the hospital with the girls as well, because I was still very weak.
Sophie' And I said, “Well you know, I need help with these times as well.” And eventually Home Start started with us in December and they could do a morning a week which sort of helped, you know, helped me get…
Sophie' … to hospital, to the doctors or whatever I needed to do that week without the girls. That was a big help, but I still needed a lot of physical help which that, there wasn’t really much help on that front. And after the fact, ages and ages after I think we were sort of talking June or July and looking back and thinking about what happened and we said, “Well hang on there are people that live in the community who, who are ill and they do need, they might need medical attention very quickly if they’re on their own and they often have these pendants that they wear. And I thought well that would have been perfect, because if I felt ill, at least I could have alerted the emergency services or somebody to come and get in the house and at least look after the children, regardless of what was happening to me, you know, the children would have been looked after and that gave me, you know, that would have given me a lot of peace of mind if we’d have gone down that route, but nobody actually said, “Oh there’s pendants for this kind of thing if you’re, you’re ill.” And…
Tom' We felt as professionals ourselves that as health professionals these people should have had a few more solutions up their sleeve.
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.
Michael is a website manager. He and his partner were expecting their first child. White Australian.
And were you in the room when anyone came to explain to you what was happening and why they had to do the emergency C Section or had that all happened earlier?
I think they’d explained a lot of that to my wife in the morning, but I did sort of only arrive may be an hour and a half after she had sort of been woken up. So some people had come and explained it. Right you’re going to having the baby today because of this, this, and this. And she had a bit of explanation made to her, but then we seemed to have plenty of doctors that would come in and sort of explain everything.
Some of it, my wife had heard before, a lot of it was new to both of us, so… There sort of finding out a lot of information. There was possibly a bit of information overload because we were just trying to understand things ourselves, and there seemed to be this strong procession of, you know, one doctor after another doctor, another doctor, I don’t know if that’s normal or if it’s not normal, but there seemed to be a lot of doctors. My memory’s probably not that great, because I’m thinking of so many different things, but I have this sort of vague memory of being introduced to about four anaesthetists and it sort of, there was just one after the other, after the other.
They explained, there was a little bit of an overlap between some of them, but a lot of them were explaining, you know, slightly different things, as to what their role was going to be.
Was it difficult information to take in or just too much of it?
No I think they did actually a wonderful job of trying to explain it in a way that a medical dummy like me could understand things. So, there were lots of sort of key words that I was trying to make sure okay. Pre eclampsia, a couple of doctors had mentioned that. I actually have never heard of that before. I don’t know if it’s common or not common, but okay. That’s you know, what we’ve got here. So just trying to remember a couple of key words. And sort of take in as much as I could.
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.
Kerry is a receptionist. She has three children and lives with her partner. White British.
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. 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. 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”.
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 long do you think the haemorrhage went on for?
I would probably say half, not more than half an hour. It literally happened and I was five minutes, within five minutes I was in the theatre.
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 was 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 like 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 hysterecto
Age at interview:
Age at diagnosis:
Alex is a solicitor, married with two children. White British.
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.
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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