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Cara

Age at interview: 37
Age at diagnosis: 29
Brief Outline: Cara was expecting her first daughter. She went into labour naturally but was given an emergency caesarean section. Shortly after delivery she started to haemorrhage. Doctors were not able to stop the bleeding and performed a hysterectomy.
Background: Cara worked in advertising as a media director. She lives with her partner and has three children. White British..

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Cara was describing her experience from eight years ago, with her first daughter. She had a normal pregnancy and gave up work at 38 weeks expecting to have a couple of weeks of maternity leave before her baby arrived. However she went into labour the day after she stopped work. It progressed quickly and by the time that she arrived at the Birthing Centre she had selected, she was fully dilated, and in the second stage. She went in the birthing pool for a while, but the baby wasn’t coming so they shortly transferred her to the local hospital by ambulance. This was delayed somewhat as there was no gas and air in the ambulance. 
 
She realised when she had been in the hospital for a while that she had not passed urine for several hours, and she had a catheter put in. She finally had to have a caesarean, her baby daughter was delivered healthy, with a good Apgar score. However shortly afterwards Cara started to haemorrhage. There was a staff shift change between the end of caesarean and the start of the bleeding, and the new doctor on duty was aggressive with Cara as she came in and saw the bleeding – telling her to “shut up and lie down”. The doctors and midwives could not stop the bleeding so they took her in to theatre. She had to sign a waiver before she went in to allow the hysterectomy. She woke up in intensive care (ICU) having had a severe haemorrhage and hysterectomy. The next day she was transferred back to the delivery area but again started to bleed profusely, and this time doctors performed an arterial embolisation as they discovered she had a hole in her iliac artery. She went back to ICU for a week and was then transferred back to the labour ward. Cara felt this was a mistake as she was not given any support through the night and left with her baby who she could hardly lift. After a couple of days she was transferred to a private room on the post-natal ward where the care and support were somewhat better.
 
Her daughter was looked after by the midwives while she was in ICU, but then she was expected to look after her herself. She did try breastfeeding, and expressed for a while, but her milk didn’t really ever come in. She was referred for counseling before discharge, which she had once she was home. But she did find that hard as it was near the maternity ward of the hospital. She mentioned a very supportive visit from a nurse who worked up on the hysterectomy ward. On discharge she felt very alienated from family (she felt she couldn’t share in her sister’s pregnancy) and other friends and women in her ante-natal group. Her marriage broke down within the first year, and she divorced. But 8 years on, she has a new partner and successfully had twins (genetically theirs) through IVF with a surrogate in the United States. The twins were a year old when she was interviewed.
 
 

Cara was in intensive care. Once she was transferred she was expected to get up and get on with...

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And what had happened was… So I was taken from my bed in Intensive Care which is a very cosy place to be. You’re very well looked after and there’s all the latest equipment, to suddenly no TV, my bed didn’t sit up with the press of a button. I had the catheter removed that was just like, I had the catheter removed. So I hadn’t been on my feet for a week and then I was just expected to get up and get on with it. When I say expected to get up and get on with it, I mean looked after baby. All on my own.
 
Now even a new mother has her husband for support the first night home. I was totally alone, and this midwife didn’t really spot that at all. You know, the first time I went to the toilet I shuffled, also you know, I’d had a Caesarean. Then I’d had, been cut open again and had a major abdominal surgery, plus I was incredibly weak from all the blood loss and so on. And I sort of shuffled off to the toilet. She sort of came running with a jug of water. Oh pour this to stop the stinging. I said, “I had a Caesarean.” “Oh yes, of course silly me, yes, okay, yes okay.”
 
And then like, you know, I noticed these cribs that attach onto the side of the bed, the baby can co-sleep and I commented on, “That looks good.” “Oh they’re for our Caesarean patients.” “That would be quite nice for me, because I’m not really very mobile.” I don’t think I got one. I think I had a… Anyway.
 
And then through the night, I actually had what I kind of look back on, I felt like I was in a survival mode through that first night because I was left on my own with the baby. Now bearing in mind the baby had been looked after by the nurses at night. This is my first night out of intensive care. And my first night with the baby, all on my own, with no support whatsoever. In fact no one. So I remember her crying in the middle of the night and me going, “Right she needs a bottle. Now I can do this.” And you know, it’s like getting out of bed, pushing the baby in little thing down the hall. It was all dark and quiet, no one was there. It was like, a bit abandoned. Right I know there’s a place to get hot water and I’m getting the hot water and I’m going back to the bed. And it was just, and then I accomplished it, the baby was fed and the baby went down again. 
 
I mean just preposterous really when you, when you think about it, to not have someone on hand and, or even be left in that position really. And I remember thinking actually when I left the hospital, if I win the lottery I think there should be a suite that allows fathers to stay over in very difficult circumstances. Because no one should be expected to do that alone. You, you know you would have support, even as a normal Mother. 
 
 

Cara was supported in establishing breastfeeding and managed for about three weeks, but after...

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Well actually, yes, I did actually ask about that and I was given, Daisy, you know, one of these electric pumps and I was pumping actually. I did pump and even though I was in intensive care for a week, I wasn’t breastfeeding her during that time, I did do some pumping. And when I went… when I was transferred to the post, post natal ward, I did actually start breastfeeding her. I was quite concerned because I was pumped full of a lot of drugs, and I did ask all these drugs, and I was assured that it wasn’t a problem and it would be safe. So I did start breastfeeding her, and even though she had been bottle fed for the first week, she didn’t have any problems latching on. And I did actually go on to breastfeed her for about three weeks. But truthfully my milk never really came in, you know, it just didn’t. And I started supplementing with a bottle quite quickly and it’s not a very big jump to suddenly saying this is too much. I’m going to be making a bottle anyway, let’s… I’ve done my, I’ve done my best and my milk was not going to come in and my Mother hadn’t successfully breastfed, my sister hadn’t. So they were both sort of quite encouraging to say, enough call it a day. Well who’s to say your milk would have come in anyway? It was very disappointing, but to be honest it was not top of my concerns by that point. So, I was bottle fed.
 
Yes, and your body had been through so much…
 
Quite it’s a bit unrealistic for them to expect that you’d have enough nourishment to share after all of that. I think you’ve got to kind of replenish your own natural blood supply and stuff. But I did, I did have that bonding moment, and we did sort of give it a go. 
 
 

Cara felt alienated from her peers, and uncomfortable around people who seemingly had such an...

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But yes, it was really, really difficult to, to sort of, but I think one of the hardest things was I felt very alienated from my peers at the time, which must be something that you come across quite a lot. 
 
Obviously I had been part of NCT ante natal group. And you know, I tried my best. I went along to the meeting, you all do after all the babies are born. But you know, who’d want to have someone like me around at that time [laughs]. You know, and then with the yoga group, same thing. And it didn’t take long before I distanced myself quite quickly. I felt very bitter. Very uncomfortable being round people who seemingly had it so easy. And of course, everybody wants to tell you how awful their experience was. And I still can’t tolerate it. I have no tolerance for someone who wants to cry because they got a Caesarean. Awful isn’t it? Just imagine. You know, and I have evolved since then and I do appreciate that to some people their emotions can be more sensitive to things and I am, I do appreciate that now. But it’s not a topic I’ll gladly sit down and chatter about. I just excuse myself from it.
 
Well it went further than that, I mean I felt alienated from my sister, I mean it really did impact on my relationships for many, many years, probably until, until I completed my family last year. So you know, it’s, seven years of basically feeling quite alienated in that way. Although to be fair time does resolve a lot and you do come to terms with things. And start dealing with things, but yes, it does alienate you from whole age group. I remember I wrote a diary at the time, and I remember writing you know, “Oh gosh, I’ve got to deal with this for the next however many fertile years, me and my peers have or would have.” You know, that’s what 20 more I was 29, well may be ten or fifteen more years basically and having to deal with that, so yes. I mean fortunately for me it hasn’t turned out like that way, because I have been very lucky to go on and have more children, but yes, I mean it’s quite a scary thing at the time. Makes you feel quite different.
 
 

Cara had a hysterectomy after her first child and was very keen to try surrogacy. She had her...

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No I don’t know. I was very, very paranoid, knowing that I wanted to do surrogacy. I was a bit worried about the necrosis, ovarian necrosis… I’d come across it in my reading. And you know, when you have an emergency hysterectomy and…
 
…that its quite a tough job as I understand it and I was worried that I would end up losing one or both ovaries and going into early menopause. I was worried obviously about going into early menopause, but also worried about, because I wanted to retain my eggs for surrogacy. So I started to go once a year for testing to check that my eggs and everything’s fine, and I did that each year at a local hospital. And each year I was getting fine readings. So that reassured me. I think I would have felt quite nervous and I think, even though I’d missed a couple of years, I think I’ll probably go back, just for peace of mind to know if I start going into early menopause, although that said, probably eight years later, I’ll probably go into menopause at the time I would normally. But you know, I think you just need the extra reassurance.
 
 

Cara was devastated not to be able to have more children, and pursued gestational surrogacy. She...

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So your sister was.. did she have children?
 
She had one child about a year older than my daughter at the time. And she’s gone to have another child and stuff and I couldn’t really share that with her. You know, she had her pregnancy, she had her child. I don’t even know her birth story, for her second child. I didn’t want to hear it, and she didn’t, she didn’t try and tell it, you know. So yes, you do lose that kind of right passage of being, you know, in that moment, but you know, I tried to tell myself that women had never given birth at all. So you do, you do start looking for people worse off than you, I think that’s a natural thing and you know, I know that obviously have a healthy baby is a real blessing, but there is a saying that was quite common the PPH survivors web site which is “the joy does not diminish the pain. Nor does the pain diminish the joy.” And you know, well meaning people say, “But remember you’ve got a beautiful baby.” And that’s true and you feel joy. But it doesn’t diminish the pain that you feel, not being able to complete your family. But neither does the pain diminish the joy. You can still celebrate and enjoy your child whilst living with the pain of knowing that you can’t go on to have the rest of the family that you wanted.
 
[Laughs]. Well. I arrived home and literally within two weeks, I’d decided surrogacy the answer. I’m not having it, you know, I always wanted more than one child. Oh look at this, you know, there’s this thing called surrogacy. And there is this amazing thing called gestational surrogacy. Because even though I’d had a hysterectomy I still retained my ovaries. And they were very clear about that. So I’m like okay well I’ve got my own eggs and I can use my partner’s sperm and create our own embryos. We just need somebody to carry them. And voila there’s the baby.
 
But of course it’s not quite that simple. And it took us the best part of seven years to actually find a route to success and we’re really lucky now, our twin daughters were delivered last year for us, so…
 
 

Cara had a haemorrhage and hysterectomy after her first daughter was born. They have a great...

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I think I honestly feel that it hasn’t. I was fortunate. I felt like I bonded with her really quick and I know some people can have bonding problems. I don’t remember having any issues and if they were, they must have been very fleeting. And you know, it was her and me. Particularly, obviously becoming a single parent, she was my, you know, my little side kick really. And you know, she remained my only child for seven years, and we have great relationship. We’re really close. Yes, I just, I’m fortunate, you know, that hasn’t been something. 

 

Seven years after she was in Intensive Care, Cara was in the United States for the arrival of her...

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So were you in the States for the whole pregnancy?
 
I met two women who had gone on to have surrogate babies in America. One had done all the leg work, the other had followed her path, and I followed both their paths with the same fertility doctor, the same surrogacy agency.
 
Right.
 
You wouldn’t know where to start otherwise. And I’m good friends with these women now and I’ve followed, you know, they recommended and so I followed, and we went out to America to meet our suggested surrogate, who we got on really well with. And we went back to America for IVF treatment. So I was doing IVF here in the UK, but I went to the States for the egg retrieval and the fertilization to create the embryos. And the transfer.
 
And then we’d planned to go back a month before the birth, but the babies were delivered at 29 weeks. So we missed their arrival and we spent six weeks in the neonatal Intensive Care Unit in America. But actually they arrived two weeks before my eldest daughter’s birthday so I was actually, seven years ago today, I was in Intensive Care and here we are again in Intensive Care with the babies. 
 
But thank god, they’re healthy and well and they’ve had their first birthday and not without a lot of bumps along the way.
 
So whole old were they when you were able to bring them back?
 
They were eight weeks old.
 
Okay, so eight weeks from their birth date?
 
Yes.
 
Wow so they were still really tiny.
 
They were 5lb when they came out of hospital, they were less than 6lbs when we flew home so…
 
 

After her haemorrhage and hysterectomy, Cara found an online support group which was a lifeline...

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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…
 
Yes.
 
But all of those topics kind of come up, so, it was very important for me actually.
 
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