Conditions that threaten women’s lives in childbirth & pregnancy

How women felt physically

Women were understandably keen to get home as soon as possible. After days, weeks or even months in hospital, separated from their families, being discharged was a big day.

Alex had been in hospital for several months with placenta praevia (where the placenta is in the wrong position and blocking the birth canal), separated from her husband and toddler. She described the emotions of finally leaving the hospital.

Alex described how “hugely emotional” it was to finally leave to hospital to go home to her family.

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Yes, it was hugely emotional coming, leaving. I can remember just getting to the waiting room and just bursting into tears and then getting into the car and having to sort of [does short puffs out through mouth] we’ve made it, we’ve made it. I can’t believe we’ve done it. We’ve done it.

And you know, I came in September and all the leaves were on the trees and it was spring or early autumn, but it felt like spring and came home, and while we were in special care it was one of the really bad dumps of snow and I had to walk with my snow boots to sort of get to hospital and all the staff had been snowed in, and the season’s had changed and the Christmas lights were up and it was, you know, and I thought I’ve not driven a car, I haven’t eaten out, I haven’t you know, done anything normal for so long or been on my own which was really. And that was a long time before I was on my own. I think that was when I went to get my hair cut and I thought. I mean you’ve been in hospital and in a bizarre way that was a very lonely thing, even thought people are around you all the time. But, to physically not be encumbered in any way. It was a very, you know, you come home and things were actually in the right place and that’s not how I would have done it [laughs]. So I had to get a grip. But it was lovely you know, being in, and it was a really special Christmas. It was a very intimate Christmas but it was you know, you are a lot more grateful for what you’ve got [laughs].

What sort of physical shape the women were in when they got home varied widely depending on what condition they had experienced, how ill they had been, and how long they had been in hospital. (See ‘How women felt emotionally’).

Women were often physically very weak. Alison, who had had a haemorrhage (heavy uncontrolled bleeding) and hysterectomy described being weak but “desperate to get home”.

Alison was going “stir crazy” in hospital, but she was also quite scared at the prospect of...

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Looking back, not great, physically still very weak, but I was just desperate to get home. I’d just had enough of being cooped up in a little room. They’d given me a, a side room in the hospital, and as much as that was great for visitors and being able to be private and that kind of thing, actually after six days of being cooped up in solitary confinement effectively, I was going stir crazy and I just wanted to get out.

But actually leaving hospital after six days was quite a scary thought as well. Just, it’s amazing, in having such a short period of time, you become almost institutionalised, your little bit, you know, its familiar, it’s easy, there’s people there who know what to do if… And you come home and you suddenly go, “Oh no, I’m on my own with a baby,” [laughs]. Well not on my own, but you know, it’s, but yes, physically I was still pretty weak.

I remember the drive home was really uncomfortable and I don’t think my husband has ever driven as slowly as he did on the way home. Every little twist and turn in the road was like, “Slow down, it hurts, slow down.” And we live on a steep hill. We had to make sure we parked the right way round, so I could actually get out of the car, because even lifting my legs up, over the ledge, to get out of the car, was really, really uncomfortable, and just shuffling down. Shuffling down the drive, and just everything was really slow and just, just really hard work. Just even little things was really hard work, but I was just glad to be in my own environment and just, just more comfortable, being where you can relax properly, and you can have people in whenever you want or need them here, and that kind of thing. So that was definitely better than being trapped in the hospital.

Some women were still bed bound or in a wheelchair when they were discharged. Belinda was in a wheelchair when she went home, “not in the best of states”. Lisa, who had had a hysterectomy and problems with her hips, was bed bound for months afterwards. She couldn’t manage stairs or look after her newborn baby. Her partner had to look after her as well as do all the care of the baby. Sarah, who also had a hysterectomy, was in a lot of pain. She couldn’t manage the sofa so her husband, Rob, organised a sun lounger for her, so she could get in and out of it. A common frustration for these women was not being able to look after their children.

Rob described how he and his wife managed in the weeks after she was discharged. He had to nurse...

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Rob described how he and his wife managed in the weeks after she was discharged. He had to nurse...

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Age at interview: 34

Sex: Male

Age at diagnosis: 29

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So tell me what it was like to come home with her still in a lot of pain and baby and…?

Do you know a lot of this is a blur. I remember that really clearly and then, then it becomes a bit blurry really. Because we had the two others, because they were only little tots themselves. Honestly, you know, I don’t remember a lot.

I know my wife couldn’t. We had we had to get a sun lounger, that you have out in the garden for her to sit on. Because the sofa, we didn’t have this one, but it was one like this, because she could get down on it, and if, and we knew for a fact she wouldn’t be able to get up, once she got down. So we got this sun lounger, because you can, you can lift it up and down by the arms and you can pull the legs up. So she pretty much lived in that. She could sleep in there, she could lay it up and down, and we could get her in and out and up and down. But, you know, because, and I was still working as well, although I did reduce my hours. And it, it all went by in a blur. I don’t know what happened. But we just did, you know, I did my bit at work and my wife’s family would come round and babysit or whatever and then when I came home I’d look after the kids.” And, you know, and, it helped her with whatever she might need, bathing, or pain killers or whatever, you know, nothing was too much trouble for my baby honestly. I give my wife whatever she needs. I’d walk over broken glass for her, you know, we did, we did it all. You know, and we worked together, you know. She did as much as she could which wasn’t very much at the start, but she wanted to, you know, because she’d missed out on so much, she feels like, you know, especially now with [third daughter] being the last baby, she’d missed out on, you know, such an important part for this family. She want, she want there for it. So she was determined to be there, you know, but it was difficult. She couldn’t hold [third daughter] for every long and you know, and with [second daughter] not being very well, you know, she’s not very well at all. So there was a lot she couldn’t do for her, and she found it pretty tough.

Belinda discharged herself from hospital. She left hospital in a wheelchair and she was very weak.

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Belinda discharged herself from hospital. She left hospital in a wheelchair and she was very weak.

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And once you got home, what sort of state were you in when you discharged yourself?

I came out of the hospital in, well wheeled out of the hospital in a wheelchair. Could walk but not very far. Kind of a ten minute walk wore me out. Not in a very fit state really. That was the reason I discharged myself. They wanted to put me on the maternity ward, but I didn’t want to go and look after the baby for a week. Probably just because I hadn’t been able to eat for weeks so it was basically just trying to bring a simple diet and everything back in.

She came home sooner than we were expecting as well, so we had to get family members to come down and help, because I couldn’t really carry or anything because I’d had my C Section an upright so the abdominal stuff is here. I’ve all been cut. So probably quite weak. And not really motivated to do very much. Almost forgetting that you have the baby, because the baby, of course, was still in the NICU.

I went in. I wasn’t allowed to drive because of the Section, so I went with some neighbours that were going in for a different reason. So I went in with them. Got a lift in with them, but it was... I kind of felt myself planning the routes, you know, thinking about oh what route do we need to take when this happens. That’s when it hits you that it has happened, the baby’s there. It’s just that you have no recollection, because of the general. So not in the best of states.

After being in intensive care with septicaemia (blood poisoning), Anna needed a zimmer frame and...

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So I was given crutches. I was on a zimmer frame to start off with, to keep my balance and… and then I had crutches to go home with. And that was a whole new challenge, because it was, it was relief to be around my children, but being around them and not being Mum, not really being Mum. That was hard, you know. The fact that everyone else was looking after him and that I wasn’t, because for me, it’s important to be Mum, it’s important to be that special person because Mum’s are special. No matter who they are, they’re special. And I wanted to be special. I was special to [son’s name] I wouldn’t, I was like there all the time doing everything for him. I was, you know, I wouldn’t say obsessed but I was really, I loved being a Mum and it was so hard not to be able to do that for [son’s name]. And that sort of made me go up and down quite a lot. I found it sort of hard to bond, not that I hated, I never hated him, not once. People ask me, I had a lot of people saying, “Do you resent the baby?” No never. I’d do it all over again, if it meant I could have him, no questions asked. But it was the hard fact that I, mentally couldn’t do it. And physically couldn’t do it, and I was going through so much other stuff that… my whole body and brain couldn’t make sense of, how was I going to be there for somebody else when my body couldn’t even make sense of it myself. But as I got better, I did, I made, like made much more effort and things like that, because I wanted to be that Mum so bad. And I have. You know, we are there now, you know, and it did take a long time, and it does take time. And in this sort of situation they don’t, it doesn’t just happen, you know, and that’s something I found really hard, because I just wanted it to be done, over and done with now.

Women felt very tired, and several who had had a haemorrhage felt very weak, as they had lost so much blood.

Karen felt weak, sore and constipated because of all the iron infusions she had been given after...

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And what were those weeks like for you? What were you like physically?

Very, very tired. Really, really tired. Tired and sore. Very constipated. Because of all the iron infusions that I’d had to get my haemoglobin levels back up. I was, I obviously had iron infusions in the hospital, you know, packs and packs of them and then I was on really heavy duty iron tablets. And that made me constipated. So that was really, really uncomfortable. I then found out that there’s this other stuff that you can take called Floradix which is an iron supplement, but it’s in a liquid formula so you don’t get the constipation. So I was a bit miffed that nobody had told me about that a few months earlier because it would have saved me a lot of discomfort [laughs].

I was just very tired. I had lots of visitors from friends and relatives. It was hard because I wasn’t able to look after my son. I mean I understand from you know, when you have a Caesarean it’s very difficult to do various things, but I knew a couple of friends from my NCT group who had had caesareans but they were still able to do a lot more than I was and they recovered physically a lot quicker. So I found that very frustrating, not being able to. I could feed [son], you know, I used to lie back and they used to put him on my chest and I used to give him a bottle, but I couldn’t pick him up. You know, I couldn’t bath him. I couldn’t do any of the night time feeds. It was quite frustrating yes.

Many of the women we interviewed had had major abdominal surgery to deliver the baby and save their lives. Often they were in a great deal of pain from those operations when they came home. Debbie had a uterine rupture (a tear opening the womb directly into the abdominal cavity) and said she was in “unbelievable pain” when she got home, and it was eight or nine weeks before she felt she could walk normally and do reasonable things. Hannah was discharged with a catheter still in.

Hannah was discharged home with a catheter in. Her husband had to empty the bag for her. She had...

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But the most painful thing was when they took the internal catheter out. We went back in, I think two days after I was, two days after I went home, just as a day patient. And they don’t give you any anaesthetic for it, and then basically… because it goes into your stomach and into your bladder, like when you’ve got a normal one. Well they had that just to test, so they can whether you’ve got blood coming out or it’s healing properly, whatever. But there’s no way of getting it out other than just pulling it out. And, and the scar, it is healed up by then. And so you’ve got this quite big balloon that’s got to come up through a hole that’s sealed up.

And I said, “Oh is it going to hurt?” And she said, “Oh it’ll be uncomfortable.” And my husband very helpfully said, “Oh well they say that, that’s a euphemism for yes it’s going to hurt.” And I was like, “Oh, great.” And that was, when she pulled that out that was the most painful thing I’ve ever experienced. You know, they ask you for the scale of pain, it’s a nought to ten and I think labouring. I’m all right with labouring actually. I’d say that was about a six, you know, even when it gets bad it’s not that bad. But this, it felt, I imagine it’s what it would feel like to be stabbed. And that was awful and I just thought… And I had that moment of I can’t believe you’ve just done that. It was extraordinarily painful, and actually the most painful things about the recovery, were not the big surgical stuff, it was all of the places where the lines had been in. They were really painful. They were all bruised. It was all up my arms, and the one in my neck and stuff and those were really painful and really awkward, because every time, you know, you catch them on things and stuff like that. So yes, that was the worse, and coming home with a catheter, two catheters, in effect, was horrible. Because I wasn’t given any real advice on what to do and my husband was having to empty out, in fact he was having to empty out in hospital.

And so that sort of, it’s a real lack of pride. You know, you feel, I can’t believe my husband’s having to do this for me, and you just think, oh God. On top of everything else this is just the final sort of embarrassment really. That’s quite bad, and you know, you’re walking around and you’ve got it strapped to your leg and stuff. You’re not really given any advice on what you should be doing with it, or how it should be, or…

Kerry, who had placenta praevia and a haemorrhage, was in a great deal of discomfort when she got home. She should not have been driving for six weeks because of her caesarean operation, but she didn’t have the money for taxis or anyone to give her a lift, so the only way to visit her son in neo-natal intensive care (NICU) was by driving.

Although she was unable to straighten herself from the pain, Kerry drove and did the shopping for...

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And what sort of state were you in physically when you got home?

I couldn’t move. I couldn’t straighten myself up. It was an effort to go upstairs to the toilet. I couldn’t cook. I couldn’t hold the babies. My son was only four and then obviously the middle one now, he was only eleven month old. He wasn’t walking. I couldn’t pick him up and it was like that for at least a week. I was basically just stuck on the couch.

Okay and did you recover physically quite quickly?

No, because I was going to the hospital twice a day to see the baby and spending a lot of hours there.

And that delayed your recovery do you think?

Yes. Because I was driving and I shouldn’t have been driving a few days after a section. I know I shouldn’t but no one said, you know, to the hospital it’s like £7 and doing that twice a day, I’ve not got that kind of money so, get to the hospital that many times a day. At the time me partner was facing immigration problems. He was just took into a immigration removal centre. So I was here with two kids, one in hospital, still ill myself and my partner was in London I don’t even know how I got through it at the time. Obviously I was trying to do my shopping. My Mum was brilliant, but she had a job as well. She would lose her job. So I was trying to get everything back to normal for the kids because their Dad had just been took away. So I was trying to do the shopping and I know, physically, I know they told me don’t lift anything, don’t, this was like two weeks after, don’t lift anything. You can’t drive. But I did I was driving to the hospital twice a day. Trying to do my weekly shopping. My Mum I’ll do it on Saturday. I was thinking well no, I need this now. The kids need… I can’t wait until Saturday. And I did just take a lot, a lot on.

And did that hurt your scar at all?

Yes. I was walking with my back in arched… I couldn’t straighten myself up. But I just thought, you know, they’re my kids, its, I have to, I have to do it.

Although most women made a good recovery, a few women did have ongoing health issues as a result of the complications they had experienced. Hannah and Karen were both dismayed by the realisation that they were going to be less fit for the rest of their lives. “It is a very odd thing, you catch yourself thinking, oh now I’ve become someone who is going to be less well for the rest of my life, and that is a weird feeling.”

Scarring

Scarring can be a problem for some women who have had life-threatening complications. This can occasionally lead to ongoing physical problems. Hannah had long term digestive problems because of the way her internal scar tissue had stuck together. Her husband explained how it affected her.

Simon talked about the difficulties his wife experienced with her digestive system as a result of...

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Simon talked about the difficulties his wife experienced with her digestive system as a result of...

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Well I mean there are a few consequences, I mean we didn’t know for a long, long, long time as to what… basically she had a lot of kind of stomach discomfort and she was very, very bloated, very, very sore and I think everything is still stuck together in slightly funny ways. So one of the things is she’s bloated or you know, still constipated or whatever, intensely painful for her. And, we had no idea what the causes were and that took months, actually that took a long, long, long time. That was actually this year really that we actually finally got some kind of you know, answers to what that was, so that was like two years afterwards, and we kind of, you go on line and you try and puzzle it out. So we thought it was like a wheat intolerance and so we try and, you know, adjusting diets and trying this and trying that and you know, I mean, sometimes she would be like doubled over with it, and I mean the thing is that you don’t, she was in such intense pain with it that you lose that frame of reference of well is it an emergency now, when because, you know, she’s got her scars and various other things like, when do we actually call an ambulance or take her to hospital if something is painful, it’s not a call for action for it. And, and, just the lack of answers as to what it would be and was this now, how she was forever, and, and, and you know, she was a lot more tired, a lot of the time. She used to be kind of very kind of very busy and a very hectic life and you know, she could do that and she was not tired afterwards. And both things I think, I think the lack of energy, and just the, the sheer, you know, disruption to her life and the lack of answers for it, and the fact that this would now be stretching on forever. I think it kind of made her feel very old, as in like, right, okay, I’m 35, I’m now, not invalided, it is too strong a word, but you know, this is, I’m going to feel like this for more and I kind of went, sent her to the doctors and didn’t get too much answers, and then eventually she went back to her doctor, and they finally said, “Oh yes, that’ll be these adhesions, and you just need a low impact diet.” And this kind of stuff, “And take these pills.” And they gave her some pills and some powder that we take and it’s been brilliant. And it works pretty well. And actually that whole side of things, I think, hospitals really do need to sort out, of just… I mean the lack of joined up… because I mean in the hospital when [Hannah] was there, she got given a sandwich, you know, with a, you know, brown bread sandwich and stuff like that as her food. And why I think generally one of the reasons that she ended up being really, really bloated and having to stay for an extra day.

Scarring can also be frightening and emotionally upsetting.

Kerry was “really scared” by her scar.

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It was about twelve week later, before I thought yes, I’m OK. I was still getting cramps in my stomach and the scar was still quite open type of thing. But I remember the day after I had the section, about the tea time, it must have been about 18 hours later, I remember them saying, “Right you need to get up now. And go and get in the shower, and you need to take that off.” And I thought, can no one take it off. And she said, “No you need to do it yourself.” And I thought, I was, I just had things with blood then, that was it I couldn’t. I thought what if I open it and it opens it up or something. And I was in the shower for about an hour, and no one came to check on me to see if I was all right. I was absolutely petrified in the shower and thinking. I was trying to talk myself round to doing it, and in the end, I had to phone my partner and I said, “You need to come down now.” I said, “They’re make me take this thing off.” I was in the shower. And he had to come in, and he had to take it off. And I mean that was degrading for me. Because kind of I’d just had a baby, and I was, still if you’ve just had a baby you don’t want a man looking at your belly and all you’re bits, and I was just, I’m not that kind of girl. I’m quite, I like to get myself, I look after myself and I was thinking he’s going to see my jelly belly and it was, I was thinking oh God. And then I’ve got to let him rip that open and see that awful scar, right across me belly. But I thought they’re not going to do it, the nurses, its either him or me and I can’t do it. Because if, I mean I remember looking to the side and saying how bad is it? How bad is it? I was, and he was going, “It’s not too bad.” And I couldn’t look at it. I never looked at it for about two weeks. I couldn’t even look at me stomach. I used to have to like put my arm across me stomach just to pull my knickers on because I did not want to see that on my stomach. It really scared me.

Further surgery may help with certain types of scar that women experience. Sarah had scar reassignment surgery on her scar as part of the drain hole wouldn’t heal. Anna had septicaemia and had a hysterectomy. She was 21 years old and very worried about how the scar was going to look. Joanna’s baby was stillborn, and for her the “physical scars are associated with memory, like emotional scarring as well I suppose.”

Anna was grateful that doctors were able to leave her with a horizontal scar that was easier to...

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They ended up having to operate again on the 31st not knowing what they’d find. I had a general surgeon and a gynae surgeon in there, because they were worried that it may have got to my other organs. So they… they went in and removed my left ovary and part of my right and basically gave me a bit of a clean in there to make sure there was no infection. No other infection present. And when they finished the operation and stuff, luckily they went in the same scar, you know, thankfully… Because that sounds really daft, but as a young girl, like for me, like I’ve got to live with this for the rest of my life anyway. So to have a scar that goes across my stomach and I can hide is nice for me rather than, you know, that sort of having a scar going up my stomach for me. It may sound shallow but it’s another thing I have to live with. And you know, it’s all hard to accept as it is, rather than having, hating your body.

Joanna said that the physical scars she has from the caesarean are associated with an “emotional...

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I feel, like I say, scarred by all the physical things that have happened to me, and like whilst I feel, you know, that I went, as soon as I could, I started exercising and losing weight, and you know, and I know I’ve done really well, to get where I am, was, and again all that effort went in, because I thought we’re going to have another pregnancy in the future that I want to be in the best shape that I can be to cope with it, just in terms, of just the stress and then obviously the physical strain. If, if it might not make any difference whatsoever, but if I feel physically stronger, it might just help.

And so although I’ve done really well, underneath all that, I’m hugely scarred and whilst that doesn’t matter to people who think, I, you know, was sort of mad for complaining about my, my stomach, my scarring, you know, amongst everything else, and actually it isn’t the most important thing in the world. It does affect how you feel about yourself. So it has probably been a bit of an obsession, but then that, that was probably whilst I didn’t go back to work, and Mike was off working and things, that was the thing that was my focus for the whole of this last year, is you know, eating right, exercising right, and that was kind of my life until I’ve gone back to work.

When you say scarred, you don’t mean just physically scarred do you? Or do you mean just physical scars? You worry about at all?

Physical scars that are just associated with huge like memory, like emotional scarring as well I suppose. But yes, definitely physical scars from just having a caesarean, to having like a massive baby, to carrying like a really big baby.

Getting back to normal

On the whole women did make a good recovery, although it often took several weeks or months. Alison said she “felt a lot stronger after three weeks than I expected” and Cate was strong enough to look after all three children by the time she went for her 6 week check. “After I passed the 6 week mark I just physically picked up very quickly.” Kate had HELLP syndrome (a combined liver and blood clotting disorder). When she came out of hospital she was swollen and bruised, and had to inject herself with an anticoagulant Clexane (enoxaparin) for six weeks. But by 14 weeks she felt “completely back to normal, just settling in to mummy hood.” For Rachel, getting strong again after her hysterectomy was very important. She took up running and was focused on getting back to normal.

After she came out of hospital, Rachel took up running seriously and was focused on getting “back...

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You had run before that?

I ran before, but I just ran say a couple of circles in our local park. Just to you know, keep fit. But this time I ran in order. So I started 10k runs and then I went to half marathon and then I did quite a few marathons and it was extremely therapeutic. I mean running for me, is my way of being connected to my body and feeling alive. Being out in nature. It’s, other than painting and reading probably the most important thing I do, and probably my biggest passion.

And that’s really developed since this experience.

Yes, yes, yes. I’ve been doing it all through, yes.

And what about... I mean you went back into hospital because you were ill and then you discharged yourself. Did you have any follow up after?

Yes. I did and I remember to one follow up I came, three best girlfriends came from abroad, from my home country to support me through that period. Difficult period of December, January and my sister came again. So with one of them whose a fashion photographer I went on a shopping spree and we picked some really nice Islington shops, very expensive and I remember, I just thought treat yourself and I did. And, you know, that the gynaecologist surgeon who saved my life, saw me all through those weeks you know, being extremely inflated and you know, not looking aesthetically pleasing, and then I walked in my, in these new best clothes kind of thing, and by then I’d also lost weight, my tummy went down. I looked closer to normality and he was shocked. He said, “I wouldn’t recognise you.” And he went, “What did you do to yourself?” And then he something to [husband], “Now I understand why you were so by her bedside. So concerned about losing her.” Something like that you know. But that’s what I remember from my follow up [laughs]. That he came and saw me in a different light and it was very important for me to be back on my feet and to, to, to, what I remember from these weeks after, you know, December, January is that I couldn’t read a book. I couldn’t lift a book physically. My sister-in-law sent me this really hard covered, beautiful book and I couldn’t read it, and I couldn’t concentrate on TV. I never watch TV, but we made me, especially for me some kind of subscriptions to some channel, cinema, as if I couldn’t watch anything.

Last reviewed April 2016.