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Rebecca

Age at interview: 42
Age at diagnosis: 40
Brief Outline: Rebecca was pregnant with her third child. She had a planned caesarean section, and placenta percreta. She developed a blood clot in her leg and now has foot palsy.
Background: Rebecca is a housewife married with three young children.

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Rebecca had two previous pregnancies, both of which resulted in a caesarean section. So when she was pregnant with her third child, doctors told her that she would need a caesarean section also. Late scans showed that she had placenta praevia, and that the position indicated that she should have a radiologist present. When one was not available at her local hospital, she was sent to an inner London hospital. When she went in to surgery she expected to have a straightforward caesarean but was told the night before that it would need to be under general anaesthetic. The day before the caesarean was scheduled, she was told that all was fine. There were no signs the placenta was attached to the old caesarean scar. She was told a normal epidural caesarean could proceed. The operation went on as standard practice, and only when they opened her up did they discover the placenta percreta. Her husband was rushed from the operating theatre. He was left alone without knowing what had happened for several hours. 
 
Their daughter was born and did not breathe for 10 minutes, and was sent to neo natal intensive care (NICU). She is now fine. In addition to the placenta percreta, which caused complications with her bladder, Rebecca also developed a serious blood clot (deep vein thrombosis) in her leg which required four operations. She was in intensive care (ICU) and high dependency for several days, and in hospital for two weeks in total. 
 
She found the ICU very frightening, and being separated from her newborn very difficult to bear. She was transferred to a post-natal ward (for post-caesarean women) where she was able to be with her baby. But she was not really in a fit state to manage looking after her newborn because of the caesarean scar and leg surgery. She was finally transferred to a single room, where staff were again not very supportive or able to help her look after her baby. She was discharged at midnight, with a lot of medications, blood and urine drains, very immobile. Her recovery at home was very difficult as she was not able to walk, lift etc. Her husband had to take significant amounts of time off work, and her mother lived with them for 2 months. 
 
Two years on, she had palsy in her foot, and needs a brace on her leg to be able to walk. She no longer drives, so her husband has to do a lot of the ferrying of the children. She will only walk. 
 
Rebecca was offered no counseling, which she thinks could have helped her recover her mental strength more quickly. Her follow up has been with lots of different specialists, with no one in overall charge. She feels that there was very little information available to help her understand what had happened to her. Her experience has had a significant effect on family life and has curtailed her independence and dignity.
 
 

Rebecca had a planned caesarean, but doctors discovered during surgery that she had placenta...

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I briefly saw, I very briefly saw my husband and he, then I woke up the next morning and I was in the High Care Unit at [name]. Which was another unpleasant experience because you’re not, you’re with people with all different traumas. You’re not as I would thought, in a place where may be there’s other people who have been through pregnancy related or birth related issues. I was in this, some old man ranting, there was a man ranting and pulling out his drips on one side. There was a man who’d had an accident opposite me. They brought in somebody who they discovered had e coli next to me and then she died next to me, and they were busy cleaning up. 
 
It was awful experience to wake up, and you know, you’ve had a baby. You can’t see the baby. She was in the neo natal unit. I couldn’t see because I wasn’t even on site then, because I was at the hospital. I woke up, my husband wasn’t there because it wasn’t visiting times and they weren’t flexible. And you know, I couldn’t, my leg had swollen up, my whole body had swollen but my leg had swollen up and a few, I think he next day they ended up having to take me into, into surgery again because I’d got a, I think it’s called an embolism where, in my leg. And they had to do a fasciotomy which involved three more operations, to open up, to close one side, close the next side and which is in the end resulted in me having drop foot. I can’t move my foot. I need to wear a brace in my shoes now and things like that.
 
 

Rebecca had an emergency caesarean and surgery on her leg after she developed a deep vein...

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But I was also still in the process of having leg operations and they put me in a bed, pulled the curtain and that was it, literally they left me to take care of her. I had a really hard time. As I said, I was still, I was still on pain, painkillers, not the self… no I was still on the self-button pressing one. I had loads of, bad experiences there where they wouldn’t… because these were nurses that were geared to do post labour, not surgical trauma and recover, because the caesarean scar, was you know, that was a minor point of all the other things. I mean had blood bags and urine bags and you know, I had lots of… I had staples all down my leg where they had to do, where the embolism had been and various things like that. And I don’t think they were geared up for that type of care. 
 
I remember things like trying to get. [Second daughter] out of a cot bed with the cot next to the bed. It wasn’t tall cot, and I couldn’t pick her up and I used to get her… and I was horrible, hold her by baby grow and put my hand under her and yank her out like that and all those things were really hard for me. 
 
 

Rebecca said that her pulmonary embolism has had a big impact on family life. She now can't drive...

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But as I said, two years on the go, now, I don’t tend to… something that’s in the past you tend move on, because I have young children. I can’t dwell on it. My leg, you know, there were issues in the beginning that I couldn’t it has changed my life. I stopped driving for starters. And I was a woman who would get in a car and drive myself everywhere and my children to all their clubs and, and you know, it became a really complicated life for my husband who then had to do that. We did get a car that was adapted, so that I could drive it, but I think, I built up such a fear of having to drive with my, with my other leg and worrying that I wouldn’t be, I did, I went for assessments and I took driving lessons and I just got a phobia about it and I think had somebody spoken to me about things, you know, a counsellor after I come out of hospital, it might have helped me get some of my anxieties out, you know, in that sense. And you know, so my whole life is walking everywhere. I walk an awful lot. 
 
But you know, our lives changed a lot from, from you know, from what a simple, you know, from what we thought was a simple birth. I mean my husband now has to drive the children to all their activities, which he’s always complaining about [laughs] that’s his main hang up. 
 
But yes, we try to move on. As I said, I now walk everywhere and with a brace life is, you know, life does carry, you know, carries on as normal. You know, we weren’t entitled to any help or anything with [son] benefits or anything. They said that at the time when we applied which was just after I could walk with aids so that didn’t entitle me to any help whatsoever. I couldn’t even get a blue badge for parking the thing, and you know, I, at the time, I really did struggle with walking. You know, I was walking with crutches and you know, I couldn’t push the pram. I couldn’t, if I walked around the block you know, I would have to turn round half way with my Mother, and come back, because I couldn’t physically doing it was in, I was having such bladder problems and things.
 
But you know, two years down the line, you do, I have, I’ve just got on with it. You know, my leg is there. I have a brace. I now go to [place] every, once a year and they assess my leg. Not as to what’s wrong with it, but the… I see somebody to get a brace. I have a simple brace, but he sees if I’m eligible to get new one every, because it is a simple one, so they need replacing. So I go and see him once a year and he assesses if I’m able to have a brace. They don’t assess you know, the improvement in my leg or whatever. It’s just whether I’m eligible for those things.
 
But you do you just get on with it, and you know, I’m very lucky that [second daughter] is okay. She, you know, she was, it was very difficult taking care of her after. She suffered from colic and she couldn’t poo or anything. She would go for a week without it. She didn’t sleep. We couldn’t take her. You know, she wouldn’t lie in her pram. She wouldn’t sit in her car seat without screaming perpetually and I couldn’t do anything. Me and my Mum would come, came and stayed with us to help me out and you know, she would have to take [second daughter] out into the garden for hours to try and calm her down. Because I couldn’t physically do those type of things.
 
 

Rebecca has been left with a leg brace after surgery on her deep vein thrombosis (blood clot). It...

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And to me, you know, mine was the worst thing you could ever do. To them it’s just one of the things. Like my doctor said, “Look,” he said, “You know, you’re the third person in this hospital that’s had this.” You know, so it’s not, you know, it’s all square at the time. He said while he’d been doctor there he had had one more experience. So it’s not something that’s completely new and out of this world, but to me lying there it’s the biggest thing that’s ever happened to me, you know, its… you know, very traumatic and that and I think it had an effect on me. As I said, I stopped driving. Well I couldn’t drive for a long time. Then when I went for assessments and I had a couple of lessons. I never had the courage to drive again. And I think that took away from a lot of you know, independence for me, for the rest. It was a really tiring time, because everything had. I couldn’t do a lot of things for myself. And my husband had to do a lot of things, and things that you don’t want your husband to have to do for you and that. Yes, no I think the main thing is I lost independence. It took that away from me and also the ability to take care of [second daughter] by myself. Because nobody wants to feel that they’re reliant on everybody else to do things.
 
No. And what do you think has been the impact on the rest of the family?
 
It did have a great impact. As I said my husband you know, he still to this day says he can’t… he doesn’t have a normal weekend. That he spends all his time carting the kids to… Because we tried to keep their lives on track as much as we could, which meant keeping all the activities, moving them to the weekends. I do all the activities that involve the school or karate that is within walking distance. He then has to do things like swimming and gymnastics and football which is further away. I do feel that he had a lot of pressure. There were a lot more things that you don’t think about, but everything changes. Insurance on things. They go up because you know, it costs you, I mean you don’t think about these things, but everything costed more. We had to you know, take into account things and you know, my husband his work suffered. He had to be, he was a person who always used to go to work half past six and come home around you know, seven. It’s only now that he’s starting to regain that. Because I can now, you know, apart from not being able to walk without, I mean I can walk around the house without a brace, but I can’t walk out of the house, because I will trip up or things like that. So, I can, other than that, and a few ongoing gynaecological things which are not affecting me physically, you know, I can take care. But my husband’s work suffered. He couldn’t, he had to wait and go in late in the morning. He’s into, finance which means you might be told you work from 9 till 5 but essentially you need to be there from 6 till 7, 8, 9 you know, at night. So you know, he had to take off extra time, unpaid, unpaid leave, you know, to be with me. He couldn’t progress because he couldn’t stay you know, in his career couldn’t progress for a good time because he had to be home. He had to be home to bath [second daughter]. He had to be home to help put the children to bed and sort them out. You know, things that nowadays I can do. But then I couldn’t.
 
 

Rebecca had placenta percreta and then developed a blood clot in her leg. She would have liked...

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I think it could have been better. I think instead of being there and you’re not really aware of things a hundred people popping in when they are doing different rounds and things, telling you snippets. I think if they had been informative. Even, I know it’s really basic, but giving you hard, hard copy information. This is the condition you have. This is what it does. And then later on when my husband came in I could say, “Hey, you know, I had placenta preavia and percreta and this’s happened and certainly going, “Well I had something where it grew out and they tore my bladder.” And you know, you’re just, you’re catching smithers, you don’t understand hospital doctor lingo, and they do get enthusiastic. They do get carried away expecting you to know their terminology. You don’t know their terminology. You don’t want to ask questions because you do feel you sound stupid and you’d be surprised at the number of people that do feel that way. You want to feel like I’m not some person who doesn’t know what you’re talking about. You want to feel like you know; I’m not some person who doesn’t know what you’re talking about. And you know, whereas they presume that I knew everything about placenta preva. I actually didn’t know anything about placenta praevia. All I knew was that it was a low lying placenta. I didn’t know that it could attach to a caesarean scar and that these are the consequences. You know, I never even thought about that. I think if they if they can give you, be a bit more informative and follow up that, instead of having lots of different people coming and telling you different things. Because you’re scared, at the end of the day I was petrified. I was absolutely scared.

 

Rebecca said it was traumatic to wake up and know she had had a baby and not be able to see her....

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It was awful experience to wake up, and you know, you’ve had a baby. You can’t see the baby. She was in in the neo natal unit. I couldn’t see because I wasn’t even on site then, because I was at the hospital. I woke up, my husband wasn’t there because it wasn’t visiting times and they weren’t flexible. And you know, my leg had swollen up, my whole body had swollen but my leg had swollen up and a few, I think he next day they ended up having to take me into, into surgery again because I’d got a , I think it’s called an embolism in my leg. And they had to do a fasciotomy which involved three more operations, to open up, to close one side, close the next side and which is in the end resulted in me having drop foot. I can’t move my foot. I need to wear a brace in my shoes now and things like that.
 
I was in the High Care Unit for, I think it was four or five days. I do remember the day I came round. It was very, very traumatic for me. I had a visit from my Mum, my husband and my brother in law brought them along. And I hadn’t seen my daughter at that stage, and I was very upset because I thought, I thought personally that something was wrong with her that they weren’t letting me see her because there was something wrong and I got to the point that I really got myself worked up and eventually. They weren’t very, the neonatal unit wasn’t very accommodating. They said to me, “Look she’s not in any danger. She’s there because first of all you can’t take care of her, and because had been, she didn’t breathe for the first ten minutes they had to give her oxygen.” So it was just a standard procedure. 
 
Eventually after a lot of me being hysterical I think, they agreed to bring her for literally ten minutes. It really was literally you see your baby and that’s it. It was like that for the five days I was in. I never saw her for more than a few minutes every …. Not even every day. It was a very unpleasant experience

 

 

Doctors discovered Rebecca had placenta percreta when they started her caesarean operation. Her...

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Anyway they started the surgery and suddenly started shouting that its placenta percreta and it just all went panicky in there. And you know, when you’re lying there and it all starts to get to be… I mean my husband didn’t know what was going on and I didn’t know. But they were quite efficient. I can’t fault them on that. It was just a very scary experience.
 
They literally covered me up, they said, “Oh we’re not…” I was the whole time worrying about my daughter. I didn’t know it was having, you know, it was open… They said, “No she’s okay. She’s still in the womb. They haven’t you know, opened that up yet.” But they’ll just cover me. And they rushed me through the corridors to the other operating theatres. 
 
And that was manic, and I remember lying there. My husband standing there thinking, well he thought he could still be part of it, and there was a lot of shouting and they were saying, “Get out everybody.” They were sending people out. And then the higher surgeon of the gynae obstetricians department, he was there. I remember the faces of these people and you know, obviously they put me under full under anaesthetic and that was what as far as I know what was happening.
 
My husband unfortunately, they sent him out, under not such pleasant terms, with a student who sent him to some waiting area and he didn’t know anything. They found him in a couple of hours’ time to tell him that he had a daughter. That was all. He spent the whole day literally wandering around, because I only came out of the operating theatre at six. They didn’t contact, tell him, find him, they didn’t fill him in, nothing. They didn’t even tell him his daughter was born at 12.31. They told him at 2 that she was born and they didn’t tell him that she didn’t breathe for ten minutes. They didn’t tell him anything.
 
So he my husband is an Israeli and his English is perfect and that but he does have, you know, being in a different country, and it’s a scary thing when you’re wife… he had nobody there with him. So he found it really hard.

 

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