Karen

Age at interview: 44

Age at diagnosis: 42

Brief Outline: Karen was expecting her second son. After a healthy pregnancy she went into labour, two weeks overdue. When the baby's heartbeat became irregular doctors performed an emergency caesarean. Karen started to haemorrhage. Doctors were unable to stop the bleeding and finally decided a hysterectomy was necessary.

Background: Karen is married with two sons, one now a teenager. White British.

More about me...

Two years ago, Karen was a very fit woman (a marathon runner) expecting her second child. Her first son was 16 at the time, she was 42. She went into labour naturally 2 weeks overdue, but labour was long and she was eventually taken in for an emergency caesarean. Her son was healthy and a good weight when he was born, and she held him briefly in the delivery suite. But she had an atonic uterus (a womb that lacks tone and fails to contract after delivery) which would not stop bleeding. She soon became aware that things were taking longer than they should have been, and that the doctors were looking increasingly tense and serious. She was awake for the 4 hours of her haemorrhage, as doctors tried various techniques to stop the bleeding, although she probably drifted in and out of consciousness and wasn’t really aware of what was going on. She lost a total of 18 pints of blood, and required a massive blood transfusion. Finally after 4 hours they explained to her that they were going to put her to sleep, and they performed a hysterectomy to stem the bleeding. 

 

She woke up in intensive care (ICU) confused and in a lot of pain. She stayed there for 2-3 days before being transferred back to the labour ward and then maternity ward. She was only in hospital for a total of a week before going home. Her son was looked after in the special baby unit while she was in ICU. Once home she had her mother in law come and live with them for 6 weeks until she was well enough to start looking after her baby herself. Her husband developed shingles the week that she came home which complicated matters further. 

 

At the time of the interview, two years on she still felt very tired and hadn’t got back to the fitness she felt she had before. She had also developed thyroid and rheumatoid problems and wondered if these are connected to the blood transfusion. She has suffered flashbacks and post traumatic stress from her ICU experience and sees the ICU consultant nurse every 3-6 months for follow up, which she finds very helpful. She is also seeing a psychologist privately through BUPA who is helping her come to terms with the overall trauma. 

 

She describes feeling isolated from other (NCT) mums who did not have such a traumatic experience and were able to parent their babies differently in the early weeks. She also feels that while she received a lot of support at the start, everyone else has moved on and expect her to do the same.

 

Karen was in ITU after her haemorrhage and hysterectomy. Intensive care nurses helped her to go and see her son but she found it hard not being able hold him.

Your motherly instincts are crying out for you to do what other, you know, wants to breast feed and stuff like that and I couldn’t. I didn’t hold him. I went up to see him about two days. When I was in Intensive Care one of the nurses somehow, I don’t know how the hell she did it, but she got me in a wheelchair with all the bags and drips and God knows what and wheeled me up to special care to see [son] and that was the first time I’d seen him, obviously after the C section. And I couldn’t hold him. It was really hard.

 

And when I went up there, [husband] was, my husband, he was feeding him. He was really surprised to see me. And it was lovely to see him feeding, feeding him. So the first time I actually got to hold [son] was, properly was when I was transferred back to the labour, actually the delivery ward. I had to go back to the delivery ward before going back to the labour ward. That was on the Saturday. So, yes. That was hard, sort of three days of not being able to me a Mum. Yes, so.

 

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

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.

 

When sharing experiences with other mums about the birth of their babies, Karen felt 'excluded'...

It’s sharing feelings which you think that your friends or family, you just know they’re not going to understand or be sympathetic towards. It’s kind of hard to explain really. Yes, it’s basically that, it’s just, you know, that, you know, that if I’ve got a friend and I’ve got plenty of my NCT friends now, who have had their second babies and one of them had a, she had a traumatic birth in that she gave birth in her car on the way to hospital or actually in the hospital car park. And one thing that I found hard is that she’s able to talk about that experience and then when we’re in a group, you know, they’ll all compare stories of oh yes my first was hard you know, because blah, blah, blah and I don’t know why, I always find it really hard to say, “Well hey, [laughs] how about my situation? You know, beat that one,” [laughs]. You almost feel. It’s a really hard thing to describe but you almost feel excluded by the fact that you’ve had such a major event that you don’t want to always be coming in and saying, “Well hey I had the worst scenario.” 

Karen was involved in an follow up programme with intensive care staff which she found “hugely...

So at what point did you get to see the ITU follow up, was that…?

 

It was probably about twelve weeks afterwards.

 

And was that helpful?

 

Huge, hugely helpful, because it made you feel, because after about six weeks I felt that everybody had kind of not forgotten about it, but moved on. You know, you’re alive you made it through it, you know, it’s time to put it behind you and everybody has moved on with their life and you’re just left with this yuk you know. And so to be able to be actually go into hospital and talk to people who knew, because even if you talk to some people who weren’t related to ICU, they still couldn’t really understand the trauma of what your body had gone through, having lost so much blood and what an impact that had on you.  And so it was really, really helpful to be able to talk to them and they went through a questionnaire. Because it was important for them, you know, to know how people are recovering, so yes, it’s hugely helpful. So I think I went back every, initially every I think it was three months after that, every three months and then it went to six months.

 

And who did you talk to, was it nurse or…?

 

It was actually of the consultants, who is an ICU consultant and a sister whose, she was an intensive care nurse for 20 odd years, but she’s now gone on to doing this follow up care. So… they were great.

 

So you kept that up for…?

 

I’m still seeing them now.

 

You’re still seeing them now?

 

I still see them now. Because what they’ve said is that, people who have been through an ICU experience, they find it, it’s almost like because I’ve known them now for two years, they’re almost like family. I kind of have a closeness to them and they say that patients do find it, some patients do find it hard to let go, because its, it was an important thing in that person’s life. So, you get some patients find it hard to let go.

 

Karen had a haemorrhage and hysterectomy and applied to see her notes from her time in the general hospital, and intensive care. She found going through them very helpful.

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. 

 

Karen had post-traumatic stress disorder after her emergency. 2 years on she was still having counselling and found it 'cathartic' to be able to talk to someone impartial.

Have you been offered any other sort of counselling or support?

 

Yes. Through my doctor, through ICU talking to my GP and you know, the post traumatic stress that I had, I’m now seeing a psychologist through BUPA. Because what’s happened I’ve found that through this experience it’s brought other stuff to the surface that I’ve kind of not dealt with in the past. It’s been quite cathartic in a bizarre sort of way. Its changed me a lot in that I now, whereas I used to be, I wouldn’t say an easy going person, I’d say a person who is, who was willing to absorb things more and let things wash over me a little bit more whereas now, if somebody says something to me that I find offensive or hurtful or somebody does something. I’m, I just deal with it there and then. It’s almost like life’s too short to deal with rubbish and that’s the kind of effect it had on me, but it’s also brought a lot of other stuff to the surface as well. I mean I won’t lie and say the whole experience has been testing on our, my husband and I relationship… and so it’s just been helpful to talk to somebody as and when I’ve needed to, the psychologist so. Initially it was to see him about the post traumatic stress to do with having Byron but now it’s also dealing with all the other stuff that it’s kind of brought to the surface as well. So it’s been really, really quite useful.

 

And how regularly do you see him?

 

I was seeing him once a week. I’m probably now seeing him once every three weeks. Actually on a need to see basis, you know, I tend to sort of contact him if stuff comes up. And then I make an appointment and go and see him. He’s very, very good.

 

Was the post traumatic stress, how’s, how’s that helped you work through that? I’m just thinking because lots of people don’t get to see people and I just wondered if you could describe how, how that counselling helps?

 

Sure. It helps to talk to somebody who’s impartial. Because again, when you, when you have something like this happen to you, people deal with it in different ways and I think some people deal with it, by burying with it, that’s just their way of dealing with it. Some people want to talk about it. That’s me. But you’re very, well I’ve been very conscious that when I start talking, especially two years on. If I start talking to people about it, I just get this feeling sometimes when you’re looking at them that they’re thinking of for God’s sake she’s still going on about that. And I’m just very sensitive to that. Even though I know that other women who’ve been through the same experience, you know, five years on they still talk about it, they still relive it and it still affects them. It can’t be buried. But to be able to talk to somebody who’s impartial, to be able to get it off your chest and have a rant and a scream and a swear and what have you, without somebody judging you, is hugely important, really, really important. I would really strongly urge any woman who’s gone through what I’ve been through to go and talk to a counsellor or psychotherapist, especially if they’ve got access BUPA. There’s some really good therapists out there, you know, because if you could forget about this, you know, scenario and what’s happened you would, you know, you would, but you can’t. It’s just your way of dealing with it. The mind’s way of dealing with it.

 

Karen had a haemorrhage after her son was born. As doctors struggled to stop her bleeding, she remembers a sense of urgency and a lot of very serious faces. She didn't realise how serious the situation was.

So I was in reasonable spirits you know, with the aid of drugs as well, and so we went into theatre. Everything was fine. Baby was born, [son], healthy nine and a half pounds. And then and then that’s when really it kind of started to go wrong. 

 

I was aware that things were taking longer than they should. You know, I was told that it should take about half an hour from when you go to having the baby to when they wheel you out to the maternity ward. And I was just aware that there was a lot of things going on. I wasn’t aware at the time that I was haemorrhaging. My husband kept coming in and out of theatre. And I remember a lot of activity, a lot of people in the room. I remember a sense of urgency. A lot of very serious faces and I don’t know whether it was the drugs or whether it was because I’d lost a lot of blood. I think within the first four hours I’d lost something like 5 litres of blood. So whether or not that was making me drift in and out of consciousness as well.

 

But basically from when I went in to have the C Section to the moment they decided to do the hysterectomy was four hours. But it seemed like half an hour. I was really surprised when I found out that that was about four hours. And basically that in between that time they were trying all sorts of methods to stem the bleeding, you know, doing various things to my uterus. Putting you know, uterine balloons to try and create pressure to stop the bleeding. Basically what was happening was that my uterus wouldn’t contract. I had an atonic uterus and so the way it wouldn’t contract the blood was just pouring out of… out of me.

 

So I remember, like I say, coming in and out of consciousness. And various people looking down at me, and I remember trying to cheer people up because I couldn’t understand why there was so many sad faces and so many serious faces and I wanted to try and… I thought, I kept thinking this should be a happy time. And I kept trying to cheer, cheer people up, you know, make them laugh.

 

And then I remember them saying, “We’re going to transfer you now onto a bed to take you to ICU, and thinking what’s ICU? I have no idea what ICU was? And lying there they were waiting for the phone call from ICU to say that they were ready for me, to receive me. And then I remembered the obstetrician saying, “I’m not happy.” Because I think at that point they thought they’d stopped the bleeding and I remember the obstetrician saying, “I’m not happy because the, her heart rate’s rising and the blood pressure’s dropping.” And she said, “No, I’m not happy to transfer her.”

 

So they went to put me back on the table and I remember them saying to me, “Karen we’re going to have put you back on the operating table again.” And there was a number of them trying to lift me and I remember sort of saying, counting them, going, “One, two, three.” You know, again, trying to lighten the mood. And then I remember being put back on the operating table, and one of the surgeons or whoever said that he’d have to put something in my neck. 

 

And that they were going to have to put me to sleep and I remember at that point saying, “I haven’t said goodbye to my husband.” So that was hard, because I think I did realise that it was a very serious situation. And I do remember at some point, but when I was conscious asking, looking up at somebody and asking, you know, was I going to die. So yes. It was hard.

 

Did anyone answer you?

 

No [laughs]. I think they were just concentrating on. Yes, probably at that time didn&rsqu

Karen was shocked by how swollen she was when she was in Intensive care. Nurses had to cut off her wedding ring.

Yes. I remember being very swollen. I remember looking down at my arm and I couldn’t see any wrinkles or anything. Not anything round my knuckles or, no wrinkles at all. My arms and my hands were just bloated and they had to call somebody to cut my wedding ring off, because I was swelling so much that, you know, I was in danger really of amputating my own finger kind of thing, because the ring was really digging in. So they had to bring a guy to cut the ring off. And I remember as he was doing it. He was obviously trying to do it, but he kind of kept looking at me, and the kind of look on his face, must have made me feel like he was looking at somebody as if to say, God you know, you poor thing or you know, what have you been through kind of thing. You know, it’s like a look of horror almost on his face and he couldn’t concentrate on doing the ring properly.  And whether or not that was the case, I don’t know, but that’s kind of how I remember it. Yes, it was just a very frightening place to wake up. Yes, very surreal.

Karen was frustrated by not being able to talk to her husband.

The next thing I remember is… I remember being in what was ICU. I remember a lot of doctors around me, [husband] around my head area. And I remember them saying that they were, I think they were bringing me round, but I was still on the life support machine and they were saying that they were going to have, that they wanted to extubate me which is taking the tubes out basically. And so they did that and that was horrible. I remember fighting and you know, sort of clawing, my legs were kicking. I scratched the nurse, you know, dug my nails into the nurse’s hand. And I remember and again, I don’t, when you remember things in your own mind, it’s not necessarily as it actually happened. It’s kind of what you remember. And I remember my husband sort of turn away and walking off to the window, because I think the sight of me fighting and being in such distress probably disturbed him and yes, and then I have to remember the, just looking up and you know, I had a mask, I had drips and you know, tubes coming of me, and you know, just thinking where are hell am I? All these bleeping noises and alarms and my husband trying to talk to me, but I couldn’t hear him because I had an oxygen mask on and the hissing sound from the oxygen mask meant that I couldn’t hear him very well, and I remember feeling very frustrated because I couldn’t hear him and I wanted to talk to him, and I couldn’t communicate and that was horrible. That was really frustrating.  

Karen's older son was 16 at the time of her haemorrhage (heavy uncontrolled bleeding) and hysterectomy. Her relationship with him has been very positive. He has been a great support.

How has it affected them do you think?

 

Well I think [son]’s none the wiser. [Eldest son] my eldest, he came to see me when I was in ICU and he, he was quite shocked, you know, he, he was quite upset by it, to see me in such a state, he said I looked very old [laughs]. That’s nice. But he’s been very good actually. We’ve got a very, very good close relationship and actually he’s one of the few people now that I can talk to about it and he’ll listen and he doesn’t judge me. He actually offers me quite good sage advice for someone, you know, I wouldn’t say so young, because 18’s not young now, but he was obviously 16 at the time. But yes, he kind of offers me quite good sage advice and he always says things like, “Chin up Mum.” [Laughs]. So he’s great. He’s a good lad. But again he’s moved on so…

 

Karen was not bothered about not being able to have more children although she says she felt sorry for women who are younger and have had a hysterectomy.

And in terms of obviously the impact on your fertility, for you that wasn’t a big problem?

 

No I remember joking, when I was actually on the operating table, when I was having [son] and they were performing the Caesarean, I was joking with the, the staff saying that it was my husband’s fortieth that year and that I was going to buy him a vasectomy for his fortieth birthday. Not realising that they were probably thinking, well he’s probably not going to need one [laughs]. So no, it’s not been an issue at all. No.

 

I mean I think there’s probably a very small element that that choice was taken away from you without… yes, it wasn’t your choice if you know what I mean. Probably a very small part of me, that sort of things you know, it would have been nice to have made my own mind up about that. 

 

But actually, now, now it doesn’t bother me at all. I do feel terribly sorry for some of the women who I know have gone through the same situation that have only may be, you know, they might be in their mid-twenties or early thirties and they’ve only had the one child and know that they’ve had that choice taken away. That’s got to be really hard.

 

Karen, who had a hysterectomy, felt she wanted to write a book about her experiences as she found...

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. 

After being in intensive care for several days, Karen was transferred to the labour ward.

I had a night in labour ward. And that was quite hard because there was a woman in the next room giving birth. So there was a lot of howling and screaming and that sort of thing. Yes. It was hard. I say it was at hard, but at one point, when maybe her husband was sort of cheering her up. “Go on girl, you can do it.” 

 

That’s right, yes, I spent the Saturday night and then went into the maternity unit on the Sunday. At first, I mean one of the reasons why I had to stay is why I was in the labour ward was because they didn’t have enough room to beam me up into the labour unit. And originally they wanted to put me in a room with about six other women, five or six other women. And I just said, “No chance.” I just didn’t want anybody asking me, you know, why are you in here, that would have just been too traumatic, to go into that detail with some people that I didn’t know. I mean as it was I was only really happy for my husband and my son to come and visit me. Really at that point I didn’t want to see anybody else. Or talk to anybody else. Because you kind of come to terms with it yourself.