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 beBecause 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.

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 h. Seems quite similar to what I’ve got.

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 sheI 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 untilI 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 bigAnd 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 wasBut 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’sBut 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.

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.