Women who experienced life-threatening illnesses in pregnancy and childbirth understandably need information and support, both during their emergencies and afterwards as they are recovering. Here we describe what women and their partners told us about the information they received from health professionals and where else they found out about their condition. We also look at how and where women found support.
Women wanted information for various reasons and at various stages. These included understanding more about a condition they had been diagnosed with, before their baby had been born, or understanding more about what had happened to them afterwards. Sarah, who had grade 4 placenta praevia (the severe form of placenta praevia where the placenta completely covers the cervix/birth canal), would have liked more information about her condition, so she could be better prepared.
Yes, I suppose, I just, I just don’t know. We weren’t really given any information, just sort of you go away and you think. We weren’t, I suppose we weren’t told what would happen if, what they expected, how long that would take to recover from and what any ongoing issues would be. Or yes, and how to sleep. Just practical stuff, like how to sleep and where it should be… Because it’s quite hard to sleep. The internal one’s not that bad actually, but the external one was like a big tube that comes out so it sort of gets in the way of dressing and it’s just everywhere and you just think, oh my God. I mean how has this happened, but suddenly, I went in to have a baby and I’ve come out really quite medically…. I don’t know, it’s a very odd thing. Obviously it must be much worse for people who’ve had the uterus removed and things, but you just don’t expect it.
I think the vast majority of information I had, I did gather myself. I think from the midwife I got a little pamphlet that opened up, about this size and it had very general stuff about how you’re far more likely to heal better and quicker recovery and promoting all the benefits of general birth which is absolutely how it should be. There was a tiny paragraph about rupture, but I think from my point of view and I know some of the other people I was speaking to haven’t research it as well themselves, even though I did research it, I don’t think there’s a lot of information.
Probably some of it’s for a good reason, not to frighten people. But there’s not an awful lot of information about just how deadly it is. Just how badly things can go wrong. Yes, I knew I could rupture, but it actually said, I’m sure, on the leaflet, on the pamphlet, that was a chance in two hundred chance of rupture, but when noticed early enough there would be no further complications from this. So it made it sound like, and I can understand why, because they want to promote vaginal birth after caesarian. It’s silly and then it’s a good thing. But it made it sound like well you know, this can happen but its okay we can fix it. Whereas actually, you know, a lot of the time they can’t fix it. Because things can get so bad, and it can happen so quickly and they don’t recognise the signs very quickly. I think in a lot of cases. I was fortunate and I think it was just circumstances. They were doing an internal at the time, [second daughter], I think, came out of the womb. So they knew something was badly wrong, but I think for a lot of women, from reading their experiences, that’s not been the case. They’ve had these pains. One lady I heard of, it was at home and they don’t recognize the symptoms often enough, early enough, because they don’t know enough about it. It’s so rare and I guess that’s the same with a lot of situations, a lot of different difficulties during childbirth. So I don’t know. I feel awkward about that. There are a lot of ladies who’ve gone through rupture who’ve I’ve spoken to who are absolutely 100% against VBACs and, ‘Oh you know, really shouldn’t allow them. Once a Caesarean, always a Caesarean.’ Kind of thing and I’m not like that, because I’ve heard of people going on to have really positive vaginal births and I think that’s great thing.
But there is a part of me thinks may be there should a bit more information about how dangerous rupture is. And certainly if I’d known how risky it was, I would still have gone with the VBAC I think but I wouldn’t have had the Syntocinon. Knowing what I do now, and I certainly didn’t know about that when I researched things beforehand. Knowing, that although they say to you, it increases your chance, they kind of say along with that that but it’s very rare. But its okay, but we’ll monitor it, we’ll have it on a low dose. But from what we’re hearing in America they take a very dim view. Well in certain parts of America of using Syntocinon at all during a VBAC attempt. And so I certainly wouldn’t have gone down that road. I think I probably would have gone with the Caesarean at the point where they gave us the option. But hindsight’s a great thing and there’s not much we can do now. But I do wonder about that, should they give everyone information about had bad things can be with a rupture or would that just frighten people and then we’re going to have the rates of Caesarean Sections going up, because people are frightened to try. So I don’t know.
Some women we spoke to felt they were given enough information or knew where to find it. For example, some who had been diagnosed with conditions such as pulmonary embolism (blood clots), pre-eclampsia (high blood pressure) or HELLP syndrome (a combined liver and blood clotting disorder) felt that they were given enough information by doctors and midwives, and were able to supplement their knowledge from books and the Internet. Hana developed obstetric choleostasis (a problem with the liver that causes a persistent itch). She had an emergency caesarean to save the baby, but ended up with life-threatening complications.
I’ve looked regularly online around the obstetric cholestasis conditions my book was very useful to first give me the insight into it. Obviously as a result of the liver issue the LFTs I’ve looked on websites around how the liver function works and the test and this, that and the other, and really to try and found out what’s normal, what’s not normal. What’s a high reading, low reading? What the implications are, and it was only the other day actually that I found a particular website around specifically around research into obstetric cholestasis, to improve understanding and knowledge and research into it. So I’ve actually contacted them to say if they want to speak to me about my experience then I’d be happy to talk to them as well, because if it can improve people’s understanding of it, it can only be better for the people who experience it in the future. Also as well, if you’ve had it once, you’re likely to have it again, but fortunately I’m stopping at two and not having any more.
Yes. So looking back what about information? Do you feel that you had enough information? Or you were given enough information? You were able to find enough information?
I think I was able to find enough information. But had I not known or read myself around the symptoms that I had and the condition that I had the hospital wouldn’t have given me that at all. And it was literally just by a standard maternity book. It was just one of the conditions in the back and I was just reading them one day as you do and I came across it. And I just thought “hm”. Seems quite similar to what I’ve got.
But others would have liked more understanding of their condition and its risks. Sometimes people felt that health professionals had “sugar coated” the seriousness of their condition and they would have preferred to have more information so that they could be prepared. As Sarah said, “It’s better to be informed than ill-informed.” Kerry and Sarah were both diagnosed with placenta praevia and didn’t feel doctors explained to them the severity of their condition. In contrast, Alex, who had the same condition, described excellent communication with her doctors who explained to her clearly why she needed to stay in hospital until her baby was born (see ‘Communication with health professionals’)
Even my midwife who had been through all three of my pregnancies, even she seemed limited on what she wanted to say, or what she did or didn’t know. All she used to say was the same, “If you bleed don’t leave it. You have to go into hospital and just have it checked out.” She was quite limited with what she… I was never given any leaflets, anything like that. Any information on it.
And I go to the doctor’s surgery and my GP would print me off anything that he had. So I just thought why are they not doing it? I’m coming to like your ante natal clinics. I was going for like, all my appointments, and I’d been in how many times. I thought does no one want to actually to sit down and say it’s this? So, I think I feel like they played it down until… I don’t know I kind of felt they think she’s not going to haemorrhage. It won’t happen. That’s how I kind of felt, it won’t happen kind of thing.
But you’d rather have known what might happen?
Oh yes, I would rather they had sat down and said are you aware of what haemorrhage is? What it means. Expect, this is how much … I just thought I haemorrhage was when you was bleeding and it just trickled slowly out of you, but didn’t stop. That to me was what a haemorrhage was. I didn’t expect it to be the biggest gush. I felt like, to look at the blood, I can see it now, I felt like every pint of blood in my body was on the floor it was that bad. And I could even, I remember hearing it dripping off the bed onto the floor in the theatre and the girls, like they was mopping it, that was, and I thought oh … I just didn’t expect. I think if I expected it mentally, I could have prepared and it wouldn’t have been a big… And obviously my partner, he would have known what to expect and … And even though I was 28 weeks, I was in there bleeding for two weeks. I think someone somewhere would have suspected that something’s not quite right here, or it’s not stopping. It’s not easing. It’s going to, a little bleed’s going to lead to a big bleed and I kind of felt like they could have sat us down and started talking through the section a little bit. Because I kept getting told that they’d deal with it, doesn’t explain what happens on a section closer to the time. But surely they knew that it could happen at any time now.
I remember, I do remember a doctor from the neonatal coming up and telling me that about premature birth. He did come up. I think it was when I was about 21 weeks pregnant. And I’ll never forget what he said to me, that, “If a baby’s born before so many weeks they won’t intervene.” So I’m just sitting there thinking, God please don’t into labour now. I just felt that was unnecessary to say that to someone who was… But at the time I felt like that. But now I realise, you know, it’s better to have told me rather than me thinking why are you not doing anything, the baby’s… But at the time I just thought wow no one tells you anything except the really, really, really, really bad stuff, that you don’t want to really hear.
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.
In terms of information on offer after the emergency had happened, women often felt that there was not enough specific information made available to them. Women who had a haemorrhage and hysterectomy in particular felt that the information they were given was not written with them in mind, but rather older women who were having a hysterectomy later in life.
So I’d had a couple of, well I’d had the physio come and talk to me, about exercises that I should do. I’d had a couple of leaflets about things, you know, recovering from a Caesarean, recovering from a hysterectomy. But actually, it didn’t, I guess because it’s something that’s not that common… and apparently I was only the second case in that hospital in ten years. They, there was not really any specific advice for, that I felt was targeted to a 30 year old woman, who had just had a baby, and had just had a hysterectomy.
There was nothing to tie the two together. So the advice was, ‘Don’t lift anything heavier than a litre of water for six weeks’. And there was no kind of practical suggestion about what I might do when my husband went back to work for example. It was just, you know, “Well try and get friends and family to come and help you out.” But they were all at work, so [laughs] it was, I felt it was a real lack of… sort of specific, advice specific to my situation, I guess. That, you know, that was tailored to what I needed really.
But I don’t know whether, I don’t know whether they really knew what a 30 year old woman who’d been through a hysterectomy could do within a reasonable amount of time. You know, generally, I guess that your typical patient having had a hysterectomy is generally older, I guess. And so, and hasn’t gone through nine months of child… carrying a child. So yes.
I was in a lot of pain afterwards and there was no… When I went home there was no information on hysterectomy at all. Especially not from an obstetric point of view, and none of the midwives knew anything about it. Literally a few days after I got home, you don’t, you also don’t have any bleeds the same way as you do after you’ve had a baby. You don’t have any of that. So that was really surreal. You, I was left with an open wound from where like, if you have to have a drain in, you had that.
I didn’t even know how a hysterectomy worked. For all I knew you were just, just the womb was taken out and you were just left kind of open at the top. There was no, for me, it was only literally like, I must have been home a few days, and I had all these black bits come out, and when I, when I like rang up my doctor like, “I’ve got black bits.” You know, and they were like, “Oh that’ll be your dissolvable stitches. That had…” So the top of the vagina sew the two parts of it together so you become like a cul de sac. That’s the only way I can sort of describe it [laughs]. Just like that. Because there’s no way or anywhere to go any more. But, and that was, I didn’t have any idea, and in the end my husband went out and from like a pharmacy, they have like these little books that you can get about allergies or diabetes and there was one on hysterectomy and when he was picking up a prescription for me, he picked that up. And that’s the only way we knew anything about hysterectomy was that way.
Because the conditions these women have experienced are rare, it can be difficult for them to find out more about them. Many of the women we talked to described feeling very isolated after they came home. None of them knew anyone who had experienced anything similar and it was hard to find information in books or even online. Several women described how they felt isolated from common sources of support, such as antenatal groups, because their experiences had been so rare and extreme. Many had to go online to find out more about their condition, and what other women had experienced, but even online it was sometimes hard to find information. These women felt that there should be information available in maternity wards aimed specifically at women who have had life threatening experiences in childbirth, with information about the support groups that are available.
Gosh. I had a really. Again for about the first six months after it happened, I had a really strong feeling that I wanted to write a book about my experience because I’d spent hours and hours on the internet trying to find out information about what had happened to me, and all I could find was really a couple of postings on a Mums.net forum but most of the stuff was actually very medical stuff from midwives and obstetricians and that type of thing. Studies. There was not really anything that could offer support or explanations that you could really understand, and I just, I felt quite angry about that. It was almost like there was an exclusion. It’s hard to describe, but I felt quite passionate that, that there should be some sort of book or reference or something that’s out there for the women who’ve gone through what we’ve been through. Or even, you know, addressing women who’ve gone through a severe haemorrhage, but not had so, had the hysterectomy, they’ve gone through the trauma of having the haemorrhage and the scare of it all, you know.
In spite of the rarity of their conditions, several women had found specialist online support groups which they described as invaluable. Some had found USA websites, especially for placenta praevia (the placenta may be partly or completely covering the cervix/birth canal) and amniotic fluid embolism (AFE), a very rare complication of pregnancy in which amniotic fluid, fetal skin or other cells enter the woman’s blood stream and trigger an allergic reaction, and several women had found the Birth Trauma Association website useful. Women who had had a postpartum haemorrhage and hysterectomy found an online forum just for them particularly helpful. Karen described it as an “oasis of somewhere that I could talk to women who’d been through exactly what I’d been through and to be able to pour out your grief feelings without being judged. It was like having a huge family of sisters. …It is just a place to go that you can absolutely unload”. When talking about their experiences upset their family and friends, these online forums provided a lifeline to read about other’s experiences or to chat with others who had gone through a similar experience.
Debbie had a uterine rupture and found a couple of online support groups including one about pregnancy after rupture. “Both have been absolutely fantastic. It’s really nice to read the stories of women who have gone on to have other children, but obviously there’s lots of complications and sadly there’s some who had ruptures again… it brings it home.”
Yes, that’s been amazingly helpful. Just for… if you have a bit of a bad day you can just say, there’s always somebody who’s on line or somebody who will respond to your message and you can say, this has happened, have a bit of a rant without feeling like a bad person for having a bit of a rant about something [laughs]. And it might be somebody having made a unknowingly insensitive comment or something like that, and you can have a just a bit of a “ra ra ra ra ra this has happened”. And somebody goes, “Yes, I know how you’re feeling. It’s perfectly normal.” And just knowing that the way you’re feeling is normal is just such a huge reassurance I think. Until I scoured the internet for hours after it had happened, trying to find why, answers as to why it had happened and, you know, other people that it had happened to. Most of the experiences you go through in your life you know somebody else who has been through something similar. Or somebody who knows somebody who’s been through something similar and this was the first thing that had ever happened to me, that I thought, there’s no, I don’t know anyone else, and I really wanted to be able to say to somebody else, “How did you feel?” “What did you do about this?” “Is this normal?” And it was really weird not to be able to do that.
And even talking to doctors wasn’t, you couldn’t, you know, my GP had never come across anybody who’d had this sort of thing, so I couldn’t even go to her and say, “Is it normal to feel like this?” Because she didn’t, she wouldn’t really know. So that forum was amazing, still is amazing, for just chatting through feelings and thoughts and even physical sort of side effects issues, you know, you don’t know if is just a pregnancy thing. You know, post pregnancy thing or if it’s because of the big ordeal that we all went through when we had our children. There were people on here who, who had the hysterectomy after their first child. There were people who’ve had four or five children and then had a hysterectomy. So the people who’ve had more children, could say “Well this happened with my other children, but this didn’t.” And so that’s really helpful as well.
Yes, yes. So you mentioned a little bit, tell me a little bit about the PPH Survivors group and how much support you got from that?
That has, in the first year, it was a lifeline. It was just incredible. It was, I posted so often and so frequently that when I was asked to convey how I felt in those days, I actually just took all my posts that I was asked by psychologists so that they could understand it. I just literally took my post and it makes for really sobering reading. At the time it was really, really active site and they were women there who, it was only for women who had had post-partum haemorrhage followed by hysterectomy and although people have tried to join who have had really shocking haemorrhages, unless it’s resulted in a hysterectomy. It’s not the group for them. So you are in a place where people really understand all the issues and topics that come up. You know, there’s not something that isn’t discussed on there and its global and you get a lot of women asking about has anyone had uterine atony, has anyone had you know, a placenta praevia or a placenta accreta. And people can come out and you can find that one person. You know, well that was it. I didn’t actually find anyone who’d spent nearly ten hours in second stage. But there’s always one and that will be me. So… [laughs] it was an amazing place where people really can share how you feel and actually statistically the majority of people on there have one child, and obviously that’s my situation, so you’re able to really talk about the, the sadness about not being able to complete the families.
But even within a community like that there’s you know, differences. You do get women with four kids crying about not being able to have any more children. But again you have to be respectful. You know these are women who you know, in one case, there’s a woman, a very religious woman who’s planning on having ten children. You know, it’s a very, it’s an emotionally upsetting and wrenching for her as it is for somebody who wanted to have two. But could only have one. So yes, sort of, and of course there was the very, very tragic case which is always going to crop up where the baby is lost to, so that kind of shuts a few people up for a while, because you know, it’s a very amazing thing to come out with your baby, alive and well. So…
But all of those topics kind of come up, so, it was very important for me actually.
After Samantha’s baby was born prematurely at 29 weeks, she felt very supported by BLISS, the charity for babies who have spent time in special care units. Jo found a small online forum very supportive which was set up from the Times Educational Supplement for Teachers that focuses on pregnancy, birth and parenting.
In terms of practical support, women and their families needed a lot of help as they recovered from their emergency. Several described support from close family; Kate and Rebecca had their mothers come to stay for a while, Rachel said, “I never looked for a support group because I did have fantastic friends and my family is very near and close and warm and was there for me big time.” Other women felt well enough supported by the hospital.
But some families did not have relatives who lived close by or were fit enough to help, and some would have liked to be offered more alternative forms of support. Sophie and her partner Tom felt let down that their GP did not find them some extra help at home as Sophie recovered from her blood clot and haemorrhage.
Sophie'Yes, five weeks off just to keep things sort of running and looking after me and stuff and so when he went back to work it was quite frightening wasn’t it? Because for me, because then I was just so weak and there wasn’t any support unfortunately when we got… We asked for you know, the midwife would come round and ironically she came round and helped you bath the baby whilst I was in hospital and checked that you were coping.
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, b
Lisa did not feel that the hospital or GP directed her to where she could have found financial and emotional support. (For more see ‘Follow up from hospital’).
Some women felt able to go back to antenatal groups and find support in their transition to motherhood from those groups but others felt that it was hard to go and share such extreme experiences for fear of frightening other women. Anna felt that once she was out of hospital people thought she didn’t need support any more.
But it is hard, you know when I left hospital people, people just stopped bothering and… I felt I really struggled with friends. I really struggled with people that made false promises, and I’ve still got a lot of upset towards them people that were all round and all there, when I was in hospital. But as soon as I came out they didn’t care. That’s when I really needed my friends. That’s when I really needed people to be there for me. To basically say, you can lose your temper, yes, you can. You are allowed to feel like this. Not made to feel that I couldn’t talk to anybody and I couldn’t… I had to be positive because I didn’t really have much choice. Like I’d already made a decision that I wasn’t going to let it eat me up. But mentally it was, and it was so hard. It was so hard to get past it and there was no help.