Conditions that threaten women’s lives in childbirth & pregnancy

Follow up and counselling

Key Learning Points
  • Women who had a follow-up review at the hospital found this a positive experience to help their understanding and recovery
  • Where follow up was not offered women felt abandoned and were left with questions
  • Women noted a number of things that were particularly helpful elements of the follow up review'

             - seeing and talking through their notes

             - answering questions about future pregnancies

             - sensitivity about the place where the review was conducted' returning to

               the antenatal clinic or labour ward or even hospital could be upsetting

             - flexible timing of the follow-up review' some women were not ready for this until

               several months or even years after the event

             - an offer of counselling was helpful to some

  • The follow-up programme with intensive care unit staff that some women were involved with was considered a good model
Acknowledging that they had been through a traumatic event, and offering follow up after the emergency, was very helpful for some women after a near miss.
 
Follow up helps understanding and recovery
It is good practice for women to be offered a follow up meeting with the hospital, several weeks after discharge. This can act as a “debrief” providing women with the opportunity to understand the chain of medical events that occurred. As women were often unconscious for a large part of their emergency, these meetings can help them piece together what has happened to them.

Karen was involved in ana follow up programme with intensive care staff which she found 'hugely helpful'. She has continued to see them for two years afterwards.

Karen was involved in ana follow up programme with intensive care staff which she found 'hugely helpful'. She has continued to see them for two years afterwards.

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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.
 

Alison had a follow up meeting with the hospital ten weeks after her haemorrhage and hysterectomy. It was helpful to talk about her experiences from a medical perspective.

Alison had a follow up meeting with the hospital ten weeks after her haemorrhage and hysterectomy. It was helpful to talk about her experiences from a medical perspective.

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So you were talking about getting out and about and stuff. Did any doctors or anything come to see you during that time? Did you have any health visitors?
 
So the midwife came to see me the day after I was discharged from hospital, and again, two or three days later, and then she also, she did another visit I think. But sort of a few days or a week after that. So I think she came round an extra time than she might have done. But then she said to me, “Do you want me to keep coming here, or do you want to go to the clinic?” And I was quite happy to go to the clinic if I had someone to go with me, and so my Dad came and helped me get into… came to the clinic and that kind of thing. So I did get out and about doing things like that, but again with somebody helping. And then when we were transferred to the health visitor she came here the first couple of times and then we started going to the clinic as usual. 
 
But yes, no, we didn’t have the doctor; the doctors didn’t come round to see me or anything like that. I had the usual six week checkup, but at the doctors.  And then I had a follow up appointment with the consultant at the hospital at ten weeks.
 
And how was that? Was that the obstetrician? So the clinic appointment?
 
Yes.
 
Was that with the same obstetrician who had seen you in hospital?
 
Yes.
 
And how was that?
 
So that was more of a, a bit more of debrief than anything else, and so it wasn’t a detailed physical checkup or anything like that. It was more of a talk through what had happened again. Which actually was really helpful because I’d had time to think about, and obviously think a lot about what had happened and dwell on what had happened. 
 
And I’d also got lots of questions about the longer term. I think up until, well for quite a long time, you’re dealing with that immediate how I feel now, physically what I can and can’t do now. That you don’t really have much consideration for longer term health implications and I started, at that point to have lots of questions about, Will I go through the menopause early? What will I be able to do? That kind of thing so it was quite helpful to have that follow up.
 
So on the whole you found that consultation quite reassuring did you?
 
Yes, and it was nice to be able to talk about what had happened from a medical perspective, away from the immediate event. I mean, she was very good at, she did talk to me several times while I was in hospital about what had happened and why it was necessary. But it’s quite, I think, because you’re living with, trauma sounds quite dramatic, but you’re in turmoil at the time. You know, you’ve just been dealt this huge blow that you’re not going to be able to have any more children, and biologically of your own. Or you’re not going to carry any more children of your own.  And you’ve had, and you’ve been constantly told that you are very, very poorly. And so you’re dealing with that huge piece of news and trying to deal with a new baby, and feeling physically quite rubbish. So it’s really hard to absorb it all and take it all in and I don’t know that I’ve necessarily internalised everything that happened even now. Because you just, you forget things and so it was quite, it was really good to have that follow up appointment actually, to just be able to go through it again.
 

Debbie had a debrief after the birth of her daughter. Hearing more about what happened was upsetting but 'really positive'.

Debbie had a debrief after the birth of her daughter. Hearing more about what happened was upsetting but 'really positive'.

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I speak to the, I went for a debrief after both births actually. But it was very upsetting after [second daughter] because a lot of it didn’t make sense to me. I didn’t know the timescale of it all. So they took me through it, and they were fantastic. It was step by step, each minute what happened. How many minutes to took to get her out from when they realised there was something not quite right. 
 
Apparently when the doctor was doing the internal she felt [second daughter]’s head and then the head just disappeared out of her hands, so she knew that something had gone wrong and obviously that’s when she was kind of pulled out of the womb. So that’s when her heartbeat dropped and that’s when they took me through. So obviously without the debrief I wouldn’t have known that had happened, so it was really good to see, and they explained to me how quickly they’d acted and if they hadn’t been so quick, then things would have been very different, for both of us I think.
 
So that was really helpful having that. Very upsetting, but really positive, and I spoke to the lady there, who actually debriefed me on my first birth experience too. I spoke to her about having a support for women who’d gone through traumatic births, just generally, anyone whose had that trauma. And she said there was just no funding for it. Hospitals don’t have it. You would have to do it really off your own back. You’d have to work a way down to find mums to go to the group, and it just. It’s something I’d love to do, but it was just a bit impossible to do on my own. And particularly at that point in time I wasn’t ready for something like that. To go along and join in conversation is one thing, but to help organise that, I don’t think I could have done. But I know at some point that the hospital would have been interested in that. But unfortunately they just, they don’t have the money to do it. Which is really sad, because a lot of people go through difficult experiences with child birth.
 

Deborah's baby was stillborn. She was put in touch with a bereavement midwife who offered her...

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Deborah's baby was stillborn. She was put in touch with a bereavement midwife who offered her...

Age at interview: 41
Sex: Female
Age at diagnosis: 35
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At what point did you see the bereavement midwife?
 
She came in probably pretty early on. A few days, and she was absolutely fantastic because she arranged the funeral with the funeral home. We didn’t want the hospital concerned to have anything to do with it, they wanted to take over and I said, “No, thank you.” And she arranged all of it. Even having my son picked up from a major hospital after having his post mortem. The lady from the funeral home went and picked him up. And, and she was absolutely brilliant. She really was brilliant, but again bereavement midwives are very far and few and between and a lot of places are cutting back, even more so now, saying you know, they need to have, just, just be solely in the hospital and have one visit at home, but actually no. Again it’s just not investing in people.
 
How often did you see her?
 
I saw her probably once a week for the first few weeks. I can’t remember exactly how many, and then it went to monthly. But like I say we’re still friends now and she was involved with my conference in May. She’s a really, really lovely person, and just understanding. And even getting things like, when a child’s still born you don’t get a birth certificate. You only get a death certificate and as a Mum that’s really awful. So she got that sorted out and she got somebody who volunteered and did calligraphy and they got a birth certificate. 
 
And I know as well that babies that are late miscarriages they’re not entitled to a birth certificate either. Which when you’re 23 plus weeks and you don’t get a birth certificate when your child is born “prem”, is pretty horrific, pretty horrific.
 
She was able to sort that out for you?
 
Yes. And also the scan photos getting them put onto paper, other than the bromide, because obviously the bromide fades after a while. Just things like that, really helpful and supportive. And much needed, because I hadn’t, that’s the only thing I have now of him is, is you know, his little hand prints, and his foot prints and, and they’re really important.
 
Did she offer some counselling as well do you think or was it more the sort of practical, practical side of it?
 
It was practical, but I mean she listened. And she understood as much as somebody can understand that hasn’t gone through it. But yes, she listened. And she was caring and you know, she did really care. She was lovely, yes

 

Where follow up was not offered women felt abandoned, and left with questions. Women who were not offered follow up felt a lack of closure and were left with questions about the future. Henrietta had a post partum haemorrhage and said, “In terms of closing it off it would have been nice for somebody to sort of say what had happened and explain it a bit more, I guess. And yes, and to know if there was going to be anything in the future that might be an issue or not.”

Sarah felt the lack of a debrief after her haemorrhage and hysterectomy has hindered the healing process.

Sarah felt the lack of a debrief after her haemorrhage and hysterectomy has hindered the healing process.

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When you left hospital, what sort of follow up were you offered or given?
 
I was given… I had, sisters, I had a district nurse come out, because I had packaging’sand things to change. I was given, my health visitor came out to see me and our family GP came out to see us as well. And our family GP at the time was quite, he’s quite an old school, kind of GP. And he came and did a home visit, and I remember saying, “Oh my goodness, you know, I must have nearly died, if he came out. Did a home visit. Do you know what I mean. It was like… other than that it was literally just a six week checkup and then that was it.
 
At the hospital or the GP?
 
At the hospital, at the hospital. Yes.
 
And…
 
Which actually took place in the maternity hospital. So that was just not, that wasn’t very pleasant at all.  
 
Who did you see at that point? Was that your consultant?
 
The consultant yes.
 
Okay.
 
Yes.
 
And do you feel that he explained to you sufficiently what had happened and kind of helped you?
 
No.
 
What would you have liked from him?
 
I would have liked to have had some kind of, or been involved in, I know from hearing through the grape vine that there was some kind of debrief that happened. That my case was kind of obviously looked into and sort of, they kind of had a look at what had went wrong. And I would have liked to have been involved in that. I would have liked to have had, not even a say I would have just liked to have known what had happened, because I still don’t know to this, to this day, quite what happened. I just kind of know just kind of bits and pieces and that’s what really frustrating is like there’s bits and pieces in my notes, you know, I know that, I know how much blood I lost. I know that I had a few injections of like Oxytocin I think it was to try and get the womb back down. I know I was open for a lot, I know I was in theatre for a long time because of the time I went in, and the time my Dad said I came out. So I know, and I know that another surgeon came in from one operation he was doing and he came in, but that’s only because that’s what bits and pieces. I’ve never had one person sit down with me and say, “Okay, so you went in at this time. We started to do this, and then that went wrong. So we did this and then this happened. We did this and this happened. And then finally you had a hysterectomy and we did this.” That’s never, ever, you know, really been made clear for me. Which again has, I think that hinders part of the healing process because you do think, you know, how the heck happened? You know. So I think that a major sort of thing. I think the fact that I had no information on hysterectomy, that was like a major thing.  
 

Joanna and Mike were very disappointed by their hospital after the death of their baby. They had to chase appointments and the report into their baby's death.

Joanna and Mike were very disappointed by their hospital after the death of their baby. They had to chase appointments and the report into their baby's death.

Age at interview: 32
Sex: Female
Age at diagnosis: 31
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Mike' The meeting was basically presenting us with the findings of their investigation of which we had to read during the meeting. And we critiqued as being incorrect. There was a lot of things in there that the head of the midwifery services hadn’t realised. For example the notes, you know, me telling them that notes hadn’t been taken until whatever time it was. And she didn’t know that. And that wasn’t in the report.
 
And there was a big discussion wasn’t there about us, because as I said we’re a year, not a year, we were five months down the line.
 
Joanna' Hm.
 
Mike' Five months down the line, and I basically said, “Well no one’s spoken to us.” And I again, coming from my experiences in the police force, if there’s a murder first people you speak to are the witnesses. This was a dramatic life changing event, but recall is pertinent from those people within a certain time frame. You know, the police call it the golden hour of investigations. And I said, “Well we’re five months down the line, and no one has contacted us to ask us how we felt things went on that night, and what was chronological order.” And they kind of looked stunned by that really. Because if they can’t do that, it’s an internal investigation in relation to the midwifery care and the consultants and stuff like that. And my point was, well actually none of that matters if you get it wrong, you know, there were two of us in that room at the time. Me as an independent person, Joanna was the one who had had it done to her, and the midwife who was doing it. And it was kind of left, “Well can you provide us with statements based on what happened.” Of which we said we would.
 
Joanna' We did. We said, you know, that we would do that, and then at the time, it was kind of the end of February, and you know, I think we came away. We’d just, we’d lost a little bit of our fighting spirit. And we just had no energy left in us to do it, and we went on holiday didn’t we? And we decided, we booked a last minute holiday and we said we’re going to go away, and then, then we just, we just had this massively busy period in our lives, and you’d just kind of got a new job hadn’t you, and time started to tick on. And during this time…
 
Mike' There were other things as well wasn’t there, because basically up until that point I think, I’m always the type of person that thinks the glass is half full, and after reading that report I realised actually there were a lot of failings. And I hadn’t even contemplated any type of legal action until that report, and I came away from that hospital completely deflated after that meeting and basically commissioned a solicitors firm to look into it. 
 
So I kind of had the attitude coming from that meeting yes, it was basically, ruined our life and everything else, but I came away from that saying, “Why should I?” “Why should I now produce a statement for them, when they haven’t given us the consideration that we deserved from the beginning, and secondly the report they’ve written hasn’t even taken into consideration any feelings we had.
 
Joanna' We just got incredibly frustrated.
 
Mike' Yes. We’d never supported that report.
 
Joanna' And to this day we haven’t heard any more, anything at all from them.
 
So you’ve had no follow meetings?
 

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Seeing and talking through their notes can be helpful to women 
Women sometimes asked for copies of their notes to help understand what had happened. They felt ready for this at varying times, some almost immediately after they went home, others years later. Even though sometimes there were bits of information missing, on the whole, going through these notes, either on their own or with a medical professional, was really helpful. Some recommended going through them with someone who wasn’t involved in their care.

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.

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.

Age at interview: 44
Sex: Female
Age at diagnosis: 42
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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. 
 

Naomi had a rare bowel complication (Ogilvie Syndrome) after giving birth to her third daughter. She went back into the ward a year afterwards to go through her notes, which she was glad she did.

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Naomi had a rare bowel complication (Ogilvie Syndrome) after giving birth to her third daughter. She went back into the ward a year afterwards to go through her notes, which she was glad she did.

Age at interview: 37
Sex: Female
Age at diagnosis: 35
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And at what point did they tell you that that’s what you’d had?
 
Oh not for ages. Actually it was just mentioned in passing. It wasn’t you have Ogilvie’s or you had Ogilvie’s or however you say it. It was somebody just mentioned it, and I thought, oh is that what it was, you know, rather than, saying, this is what it were.
 
And that fact, that kind of understanding of how serious it was, who explained that to you and when was that explained? Was that something you’ve worked out by yourself?
 
I’ve worked it out by myself. And by the fact that they basically were dancing around me afterwards and I went and read my notes last year, which did actually help. And I can’t fault them for that actually. Then I was like, “Oh there’s too much stuff there.” And she was like, “No I’m going through it bit by bit.” And they did. It felt like they were doing nothing. But they were doing something. But obviously that wasn’t communicated to me, and it was, they perceived with the psychiatry thing, they perceived my comment, which was, “I don’t want to be here.” As something completely different, and actually that took me down a different road to completely the way I should have been going. And the fact that now they do all know about it. And there’s books and stuff on it there shows to me how serious it was, but I have just probably worked it out for myself and also people’s with jokey comments. “We don’t ever want to see you back here [laughs] ever again.” Or, the care assistant had been there for all three of mine on the ward, you know, just sort of saying, “Bloody hell woman.” You know [laughs] “It was bad enough with the first, you were a pain in the arse with the second, and a third look at you” [laughs]. 
 
So and it did actually help to go back on the ward to read my notes, to face it. Because it sounds silly but I was beginning to want to avoid it. And I know that the best way to face it, is to face it, and they did want, they did say to me, “Do you want us to read your notes somewhere else?” And I said, to them, “No. I want to read it on the ward.” And that, I’m glad that I did that, because that actually made it not so scary. Because it becomes something different in your head.
 
And who went through your notes with you?
 
The ward manager.
 
Okay.
 
So …
 
So you’d recommend that?
 
Oh yes. But not straight away. And I mean I went through, when I was, after I had [second daughter] I was trying to decide whether to have a VBAC and I went through… after I had [daughter], I went through my notes quite straight away, because I was told that’s what you do. And it traumatised me more, because there was yet more dates of birth and they’d got the dates of birth wrong because the clocks had gone forward, the hours of her birth, it was all… and I, so I felt that bad I just didn’t know when she was born, how much she weighed or anything. Ask me how much the other two weighed and I couldn’t tell you but for some reason it was important for the first. And it was the wrong thing to do. 
 
Then I went through them again with different people who weren’t involved and realised actually I could have had a natural birth if they’d held their nerve, but they weren’t going to hold their nerve with me. And hindsight I suppose is a good thing. And it could have a different outcome I supp
Follow up can answer questions about future pregnancies
Some women were pleased to have the opportunity to discuss future pregnancies with doctors and the risks there might be. Other women who had had life threatening events were very concerned about getting pregnant again.

Helen had a follow up appointment with a professor of medicine who explained to her the chances of her developing HELLP syndrome again in another pregnancy.

Helen had a follow up appointment with a professor of medicine who explained to her the chances of her developing HELLP syndrome again in another pregnancy.

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And was there a sort of final sort of round up appointment that you had with the doctor?
 
Yes. I had two appointments four weeks after everything. So one appointment was with a professor of medicine sort of person. I knew I must have been sick when I got the professor. Oh, I was sick [laughs]. Which was where they said about the you know, 20/30% chance of it happening again, and they said, “You know, your liver’s back to normal, but your blood pressure’s not. Carry on.” Sort of thing. And then two days later I had a kind of a standard follow up with the midwives at the hospital, which was more about, you know, is your scar healing okay. What are you going to do about contraception blah, blah, blah. That sort of standard kind of stuff again. And so, and then yes, that was it, pretty much.
 
And do you feel that that’s been enough so far? Do you feel you’ve had enough information and enough follow up?
 
Yes. I think so. I mean I haven’t, you know, everything’s been fairly straight forward and, and normal in terms of recovery. I haven’t felt unwell. I haven’t had any problems. So, I don’t feel like I needed I anymore and then, obviously because at the GP as I said, it was [son] and things like that so, I felt like I could link back in there if there’s more to be done. Because at the moment, it’s kind of well it’s all fine except the blood pressure which the GP can probably deal with just as well as, as they can at the hospital.
 

Hannah felt that although she was physically able to have children, she couldn't because it was too dangerous. She worries about getting pregnant again.

Hannah felt that although she was physically able to have children, she couldn't because it was too dangerous. She worries about getting pregnant again.

Age at interview: 36
Sex: Female
Age at diagnosis: 34
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Well there was also in that meeting a question of what would happen if wanted to have a further pregnancy. Because the midwife had told me, “Huh, no, don’t be ridiculous.” When they looked through my notes they said, “You know, you’re lucky to be alive. It would be extremely dangerous and ridiculous.” We don’t want to see you back here basically. So I was quite friendly with some of the midwives and you know. He had said however, “Oh well, if you really wanted to, you could come in and talk about it. You’d obviously have to be under our care here. And not at a smaller hospital, and we’d have very intensively manage it.” So they didn’t say no, which has left us with a horrible sort of, because I’m physically able to have children and yet I can’t. Because I know it would be far too dangerous, no matter what… I know I would be incredibly dangerous. And as well, the same pregnancy as I had before, because all those issues are still in place. So I just couldn’t face a pregnancy like that, and nor could I face another Section, and I don’t think my husband could either. So you’re left sort of in that position of you know, worry about getting pregnant. Worry obviously what we’d have to do if we got pregnant. And all these things. And so we did talk about that in the meeting as well, but I would have liked a sort of clearer. I don’t know. I’d like to be able to go back now and say can we do, can we actually find out, what is actually wrong with me now, in terms of my digestion and all this sort of stuff. And in some way try and quantify the risk of pregnancy, even though I wouldn’t I wouldn’t go through another pregnancy, but it doesn’t stop you wanting it does it?
 
No. 
 
It’s hard.
 
And do you think it would have been helpful if they’d said something else? If they’d been more definitive?
 
Yes. But I realise they couldn’t because if they say, “Oh you can’t have another child.” Is then I suppose a legal thing, and they’d worry that I would sue them. But it would have been nice to hear, you know, it would be far too dangerous and then you could close it off in your mind… So, yes, I think that is probably the most difficult thing to deal with, going forward actually. Yes. The fact that if I’d had two natural births, I would probably have been having another child now, hopefully. We don’t feel the family’s complete in that way, so … 
 
But everyone has to come to terms with that, you know, some people never feel complete do they? At some point you have to stop. But I think it’s always harder when you’re told you have to, but you know things are conspiring against you. That’s quite difficult. And the worry about getting pregnant is difficult as well, because obviously, I mean, we’d have to terminate and that would be awful, but you have to do it. And God, hideous.
 
And not having any more children is a constant, you know, because obviously your friends are all busy getting pregnant and having children which is lovely, and the family, and everyone is. And it’s a sort of joy and it’s great. But you do feel a bit… every time. And you know, the thought of never breast feeding another baby, which is such a source of you know, loveliness. And that’s difficult. But it’s not, I wouldn’t say it’s overwhelmingly difficult. It’s just one of those things. You know, like bereavement. Like my mother has died and that comes back to you, and when it comes back to you, it comes back to you with intensity, but the gaps in between grow. I thin

Alex had placenta praevia and was hospitalised for many weeks before her daughter was delivered. She considered sterilisation but was advised to wait.

Alex had placenta praevia and was hospitalised for many weeks before her daughter was delivered. She considered sterilisation but was advised to wait.

Age at interview: 37
Sex: Male
Age at diagnosis: 36
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Yes, I mean they asked in… but I guess in mean that context I was fairly adamant that I didn’t want any more. And part of me, I did have a discussion with the midwife about whether I should ask to be sterilized at the same time, and she said sort of said, “Well everything is really raw first of all. And second of all your body’s been through enough. I don’t think we should do an unnecessary, not an unnecessary, but you know, an elective procedure when it’s potentially going to go through something on a more emergency basis.” And there’s something very final about that. As much as we say we don’t want, and we don’t, and I can’t imagine we will. I would like it to be my choice rather [laughs] than forced on me. And that’s how we felt about the hysterectomy I think. You know, if it happened, it happened, but it’s not going to be the end of the world, but yes.

Where follow up takes place is important
Some women found it difficult going back into the maternity department, or ante-natal clinic, to have their follow up. It stirred up memories of the traumatic event.

Lisa had a haemorrhage and hysterectomy. She went back to see the obstetrician for a six week...

Lisa had a haemorrhage and hysterectomy. She went back to see the obstetrician for a six week...

Age at interview: 36
Sex: Female
Age at diagnosis: 35
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What follow up were you offered when you left hospital?
 
We had a six week, well it was the six week check that all mothers get.
 
So that’s at the GP’s surgery is it?
 
No that was at the same hospital, yes, the hospital, with the same obstetrician. 
 
How did that go?
 
Awful. Because it was all brought back again, and you have to see them at the ultrasound area. So that was great. Oh that was really great that was. We sat there in the waiting room, surrounded by pregnant women, waiting for their scans in shell shock. We didn’t speak. Luckily my daughter was asleep and we just sat there like that. Staring into space. Just kept hearing people coming out and going, “It’s a boy.” “It’s a girl.” And I was just like, I don’t believe this. Could we not meet her anywhere else but here? It was just, because that was where we used to go when we were happy and we were excited about everything.

 


When follow up takes place needs to be flexible & open ended 
Women felt they needed follow up at different times. Some felt that 6 weeks was too soon and felt the need to revisit and try and understand more about their experiences further down the line. Often their child’s first birthday (and the anniversary of their trauma) stirs up emotions.

Kate was offered a follow up appointment at 14 weeks, but she didn't feel it was soon enough and...

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Kate was offered a follow up appointment at 14 weeks, but she didn't feel it was soon enough and...

Age at interview: 35
Sex: Female
Age at diagnosis: 34
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I was given an appointment with the consultant, a follow up, but it was about fourteen weeks after. I thought that’s so irresponsible. 14 weeks? Anything could happen. So I managed to call up, and I thought right I’m going to be feisty mummy. I used to say, yes, sir, no, sir. But now I thought, no I’m going to stand up for myself. So I said, “No, I’m not having that appointment, you need to bring one forward.” And they managed to bring it forward. So the consultant said that my liver and kidney functions had returned to normal.
 
My Caesarean scar seemed to be healing nicely. The baby was fine. And he even mentioned subsequent pregnancies. Not actually thinking about that, and he said, “Well I would advise you to leave it for at least a year.” I said, “All right then, I’ll bear that one in mind.” For my insides to heal. And he said, you know, “You can start exercising after three months, but just take it easy.” “Swimming,” he said, “Was a good idea, but contact sport try and avoid that.” Because I play netball and I used to do body combat and things like that. Which I hope to do still. And he went on to explain what had happened. And I asked about if I were to become pregnant again, what was the likelihood of it happening and he said, I should probably go on aspirin as soon as possible to thin the blood I think, and that I would be under his care from day one. And that I would have regular checkups, but I would be considered high risk and I wouldn’t be able to go to the nice maternity ward, and he said, I’d be considered vulnerable which is really irritating.
 
What did he mean by that?
 
Well that I wouldn’t be able to go off for three weeks and not be monitored, blood pressure and that sort of thing. But I dispute that, you know, the chances of having HELLP once are very slim, twice, I can’t imagine it again. I think here are cases where it happens, but I don’t think there’s anything you can actually do to prevent it, and I don’t know. Because I think I did everything right, you know, I exercised, I tried to eat healthily. I did have the odd glass of wine, but it’s just something that happens I suppose.
 
Did he talk about the likelihood of HELLP recurring?
 
No he didn’t. No. 
 
How many weeks after the birth was that appointment?
 
That was about nine weeks after.

 

Mandy went back to visit the staff who looked after her when her son turned one. She found it very helpful in closing the chapter and moving on.

Mandy went back to visit the staff who looked after her when her son turned one. She found it very helpful in closing the chapter and moving on.

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The one thing that I did do when [son] was one, I wrote to the hospital, because they were wonderful. And I said, “Look, we’d like to make a donation, but I’d love to bring [son] in, and [husband] to come see you all.” You know, and they were great. They had a little party for us. It was lovely. And what they did. And what was beautiful about that. Again, you know, its, they didn’t have to do it. But we saw all the consultants that looked after us. There was about three or four of them and then we had the head of midwifery. We had the midwives that looked after us and Intensive Care people. Okay so we had everybody in this little room with a cake and everything else.
 
And [husband], I told [husband] I’d organised it. I said, “Look you can come if you want to, but I understand that…” You know, he never wants to set foot in there every again. So I said, “Look, you know.” I said, “Let’s go. Because I think it’ll be really good. So I need to see where I was, and thank the people really.”
 
So we went back. [Husband] was, was really not sure. So we went in and had this lovely party. And then we came out. [Husband] was still, you know, he was fine, but I was very worried about it. So we came and talking about it in the evening whenever. And this thing, you know what the beautiful thing about that was seeing those consultants smiling, because throughout that whole process it was all so serious, and…
 
I think that was the most lovely bit. And I needed to do that I felt, because I wanted to get closure on that. The whole thing. And I know [husband] was still getting very emotional about things. And so anyway, yes, that was the best bit seeing the consultants, seeing the consultants smiling [laughs]. And thrilled that we were all okay. So it was great for them and the comments they made afterwards as well were, you know, it was lovely, and the needed it as well. Because it was such a tense time. There were consultants that postponed their holidays because they needed to operate. There were, you know, there were midwives that… you know, that wonderful mid… my wonderful midwife who came to see me in the Intensive Care. So they really, you know, they really a really caring community. I think that made a huge difference for us because I think knowing that they cared actually above the whole professional need to operate, we need to do this. Really made it special for us. 
 
And so any way. So yes, there was a bit of closure after that and I felt it made a dramatic effect you know, for us as a family. We felt we could move on really from here. But yes.
 
Counselling 
Some women were offered counseling, which was often very valuable. There was great variation in when the women felt ready to talk about their experiences. While some women felt ready quite soon, others were not ready for a few months or even over a year.

Alison was offered counselling while still in hospital. She went for a few sessions when her son was 6 weeks old, but decided to visit the counsellor again when he turned one and found it helped.

Alison was offered counselling while still in hospital. She went for a few sessions when her son was 6 weeks old, but decided to visit the counsellor again when he turned one and found it helped.

Age at interview: 32
Sex: Female
Age at diagnosis: 30
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That was really helpful actually while I was still in hospital, the obstetrician offer… said to… I was going to ask actually about counselling, but she said to me, “Would you like to talk to somebody about it?” And I said straight away, “Yes.” Because I, I was really conscious that I wanted to try and, you know, obviously every Mum wants to be the best Mum they can be, but I didn’t feel, unless I got, got this out of my system and talked it through and dealt with it, head on, I didn’t feel that I was able to, able to be a proper Mum. I just I didn’t feel that I could be a good Mum whilst carrying this huge thing around with me, and I just felt that I need… that I would need to talk it through with somebody. And so, probably when he was about six weeks, I, I saw her three or four times. And actually that, short term that was, I didn’t really need to, I felt that then after that, I can cope with this, I’ve you know, dealt with a few things, and you know, I know the things that I need to do to help myself. And that was what I needed at the time. 
 
Then when it got towards his first birthday, I started to feel quite anxious and just really, I’d gone back to work when he was ten, ten and a half months old as well. So going back to work and leaving him for the first time, and everything else was quite. I did everything all at once I think, and I’d actually done some fund raising for the hospital as I went back to work and so I was in touch with one of the midwives at the hospital and I mentioned to her that I was starting to struggle leading up to his birthday and she put me back in touch with the same counsellor and I saw her a few more times, that’s how actually, and it’s strange, I thought I would have needed more support immediately after the event, but it was actually a year after that I felt that I needed more help. But I think that it just brought feelings out that I’d just bottled them up. I’d kind of packaged them away and said, that dealt with, and I hadn’t worked through my feelings, I’d just pushed them to one side and said, I don’t, that’s fine, that’s okay. Put a smiley face on and got on with it [laughs]. And it worked short term, but then it came back to bite me when I was least expecting it as well actually and so I struggled quite a lot around his birthday, which he really helped me to go back and think about what had happened and talk about, talk about the things, and really uncover the things that were bothering me. The things that I hadn’t even realised were issues really. She helped me to kind of talk those through and get to a spot where I could identify why I was feeling the way I was feeling, and, and also make me realise that there’s no shame in feeling upset about what happened. And that if other people have a problem with it, then that’s their problem. But, and so now, it’s good, because now I just say if I’m feeling a little bit down and someone will say, “Oh just think about what you’ve got.” And it’s amazing how many people say to you, “Oh but just look at the gorgeous son you’ve got.” As if, and then I would feel bad for thinking but that’s not enough, because he is enough. But it was almost as if, because I was still feeling bad, despite thinking of him, that he wasn’t enough to make… and I’ve now got to the point, where I say, “I’m feeling down about it, but that’s okay. I’m going to allow myself to feel down about it, or cry”. Because that’s what I need to do, to get it out of my system. And I find it just being like that and not suppressing how I’m feeling means it’s over and done with, so much quicker then, then if I squashed, squashed the feelings and they just hang around fo

It took Anna almost a year before she felt she needed to seek help after septicaemia (blood poisoning) and hysterectomy. Her GP referred her for therapy quickly.

It took Anna almost a year before she felt she needed to seek help after septicaemia (blood poisoning) and hysterectomy. Her GP referred her for therapy quickly.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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Before the anniversary, that’s when I really panicked, because I just thought, well what am I going to do. I don’t know what I’m… It’s weird, it’s like I was in, in prison in my head, and I was happy every, like I was myself still, I wasn’t , it was like I put on a front every day, and I don’t think many people saw past it, but my boyfriend did. And I know he worried for me, and he would just say to me, “You know, we need to get over this.” But not because he was like, oh get over it. It was because he could see how much underneath everything it was sort of eating me up and that was really hard. So when yes, when it came before Christmas I went, because I’d been going to the doctors and I had counselling and stuff like that, but they gave me counselling straight after. And straight afterwards, you are in shock and I think it takes up to six months really for you to sink it because it’s a forever change and forever is a word until you actually live it, if that makes sense. You know, you can say, oh you know, forever, but you don’t realise it until seven, eight months down the line that you actually think oh wait, this is, this is something I’m going to have to face. 
 
So I went to the doctors and I just said, “I, I need some help.” Told them, because I would think things and I’d feel bad for thinking them. And I’d think bad things, and I could never be honest with people about what I was thinking. So I went to the doctors and just said, “This is what I’m thinking.” I wasn’t going to kill myself or anything like that, but it was more like, I’d never ever think about killing myself, but it was more like the case of I just wish it would stop, I just wish for one minute this could just stop. And it wasn’t like killing myself, it was just the feeling inside me. I just wanted it to just stop. I just didn’t want to be here. I wanted to be here, but I didn’t, just didn’t want to be this person, this, this cage that I was in, and so I went to the doctors and I told them everything and they were just like, we need to get you to see somebody and then I ended up being put through to therapy quite quick and then obviously therapy has been going on and the stuff that I’ve, I ended up having to go through it all again and process it all and it really helped. I didn’t think it was, but she says as well that its, because I can like rationalise my thoughts, like I know when I’m having, but I’ve always been able to do it, I don’t know whether that’s everybody or whether it’s just me, but I can, if I think something I can make sense of it, and I think well that’s, that not really true you know. So I can step back from what I’m feeling and, you know, assess the situation.
 
And I mean I am on antidepressants. But that’s not me saying that I’m weak either because I’m not. I just needed, I just needed some help and there’s nothing wrong with that. I won’t let anybody make me feel like it either. Because most people, not many people at all have to go through what I’ve been through. So I won’t, I don’t like people, that anyone ever has, but I wouldn’t let anyone judge me about that anyway.
 

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