Sophie

Sophie was pregnant with her second daughter. During the pregnancy she developed a pulmonary embolism. Between three and four weeks after the birth, she had a haemorrhage, due to retained placental products.

Sophie’s first pregnancy had been difficult. She had had pain which was diagnosed as a dermoid cyst, which needed to be removed in early pregnancy. She had extended morning sickness and the birth was rough. However her first daughter was born healthy. When she fell pregnant with her second daughter, she also had morning sickness. When she got to 38 weeks she noticed that her leg was swollen and painful to walk on. She was prescribed Clexane (enoxaparin) but a scan didn’t show up anything. She went past her due date and was taken in to hospital to be induced. It was a difficult labour, and her daughter had shoulder dystocia, which was very painful as she was only on gas and air. She suffered some blood loss and felt very weak.

Sophie stayed in hospital for five days. During her stay she developed a sharp pain in her shoulder. Whilst in hospital a CT scan revealed that she had a pulmonary embolism (PE) on her lung. She was already on Clexane, and was given heparin injections to administer twice a day, which were very painful, and later moved on to warfarin. She was on the warfarin for 6 months, and 18 months on, still feels slight pain and swelling in her leg. She was discharged home to look after her newborn, toddler and husband, but felt unwell, as if she was an air-crash survivo. She had odd bleeding, which the midwives were watching, but it was not thought to be abnormal.

However three and a half weeks after the birth she started to bleed heavily at home and called an ambulance to take her to hospital. Once in hospital, doctors still struggled to find anything wrong with her, but kept her in for monitoring. Shortly afterwards, she had a haemorrhage (PPH), while in hospital – she lost 2 ½ litres of blood and had a general anaesthetic while they stabilised her and gave her a blood transfusion. The obstetrician said the PPH was due to a small section of retained placenta, possibly exacerbated by being on blood thinning medication. She was discharged home after a week to go home to look after her daughters, but still felt very weak and drained.

Sophie and her husband (Tom – Interview43) did not have family or friends nearby who could help, and felt they did not have enough support. They spoke to their GP, community health visitor and midwives, and eventually found some help one morning a week through Homestart, so that Sophie could go to the hospital for her weekly blood tests without taking the girls. But they felt very unsupported. Her husband had five weeks off work in addition to his paternity leave, and felt under a great deal of stress – about six months later he had a nervous breakdown. He had some counselling privately, which he found very helpful and now feels that he is on the mend.

Sophie (who works for the local council) and Tom felt they needed support once Tom went back to…

Age at interview 38

Gender Female

Age at diagnosis 36

Sophie Yes, five weeks off just to keep things sort of running and looking after me and stuff and so when he went back to work it was quite frightening wasn’t it? Because for me, because then I was just so weak and there wasn’t any support unfortunately when we gotWe asked for you know, the midwife would come round and ironically she came round and helped you bath the baby whilst I was in hospital and checked that you were coping.

But when I was back, I kind of got, I got a lot of questions about how I was and stuff but I didn’t get any offers of physical support and help, and I said, Look I’m really struggling is there anybody who can help. You know, just coming in cleaning or you know, helping me with the girls or whatever And they said at that point, they said, No

Tom The health visitor said no there isn’t. Not unless you want to pay somebody.

Sophie Yes, she said, For situations like this there isn’t And I couldn’t understand that, because, because I was still at risk. I still had a PE. And I said, Well what happens if I’m on my own with the girls and I have a heart attack? Is there, is there anything that we can do to reduce the impact on them if that were to happen And they just came up with nothing really. And after I’d had the haemorrhage I then asked again didn’t I, about help. And they said, Oh there’s this charity called Home Startrdquo;.

Tom Hm.

Sophie And I said, Oh great, great, that would be great. Whatever they can give. Whatever support Because I had to go back to hospital every week to have my bloods checked because my blood wasn’t coming down to the right levels as they’d hoped. So that meant I had to go back every week and that happened for another three months I think. And during that time I couldn’t really get to the hospital with the girls as well, b

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Sophie had a PE and a post-partum haemorrhage. Things had dragged on for so long she was…

Age at interview 38

Gender Female

Age at diagnosis 36

Could I just add something I just remembered having a conversation with my obstetrician and, and this was sort of the, after I’d had the haemorrhaged and he’d obviously been along, I mean he was around for the first pregnancy, the second pregnancy. He kind of knew what I’d gone through. And he said, We’ve only had this, this combination of problem once in eight year or something like that. I was so exasperated by it all and I said, Did she get better? Did she get better And he said, Yes, she got better. She’s fine. She’s okay And I think that was the bit where I just thought oh God, you know, somebody has actually got through this before and you know, it’s been hard, but they’ve got through it and that’s the kind of thing. I’ve got, am I going to get better? I suppose that was the thing that, by the end of that whole thing that had happened, I was just like is this just going to go on forever or am I going to get better, and I just needed a bit of reassurance really. They may have been walking round thinking, we’ve dealt with all the very serious issues and we’re not worried about her now, but, but emotionally you think, well no this keeps happening. What’s going to happen next.

So it was, you know, I can look back at it and laugh now, but I remember at the time I just thought, What do I really need to ask this man And I just thought, am I going to get better? It just sort blurted out at him. But it was just yes. I mean these people, the doctors have got all sorts of records about what happens to various people and stuff, but they hold it themselves and obviously there’s confidentiality to that. But you know, it’s knowing that somebody, this has happened, but it is rare. Okay it was eight years ago, but how did they deal with that? Has anything improved? Will they deal with, you know, will they learn from this experience? Given that they couldn’t diagnose it literally it happened. I suppose you know, there are those reassurances really, that you like to think that if you’ve been through something really traumatic, that somebody’s going to actually learn from that and help in the future. Even if it is rare.

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Sophie and Tom felt they did not receive the support they needed after they came home, despite…

Age at interview 38

Gender Female

Age at diagnosis 36

Sophie But when I was back, I kind of got, I got a lot of questions about how I was and stuff but I didn’t get any offers of physical support and help, and I said, Look I’m really struggling is there anybody who can help. You know, just coming in cleaning or you know, helping me with the girls or whatever And they said at that point, they said, No

Tom The health visitor said no there isn’t. Not unless you want to pay somebody.

Sophie Yes, she said, For situations like this there isn’t And I couldn’t understand that, because, because I was still at risk. I still had a PE. And I said, Well what happens if I’m on my own with the girls and I have a heart attack? Is there, is there anything that we can do to reduce the impact on them if that were to happen And they just came up with nothing really. And after I’d had the haemorrhage I then asked again didn’t I, about help. And they said, Oh there’s this charity called Home Startrdquo;.

Tom Hm.

Sophie And I said, Oh great, great, that would be great. Whatever they can give. Whatever support Because I had to go back to hospital every week to have my bloods checked because my blood wasn’t coming down to the right levels as they’d hoped. So that meant I had to go back every week and that happened for another three months I think. And during that time I couldn’t really get to the hospital with the girls as well, because I was still very weak.

Tom Hm.

Sophie And I said, Well you know, I need help with these times as well And eventually Home Start started with us in December and they could do a morning a week which sort of helped, you know, helped me get

Sophie to hospital, to the doctors or whatever I needed to do that week without the girls. That was a big help, but I still needed a lot of physical help which that, there wasn’t really much help on that front. And after the fact, ages and ages after I think we were sort of talking June or July and looking back and thinking about what happened and we said, Well hang on there are people that live in the community who, who are ill and they do need, they might need medical attention very quickly if they’re on their own and they often have these pendants that they wear. And I thought well that would have been perfect, because if I felt ill, at least I could have alerted the emergency services or somebody to come and get in the house and at least look after the children, regardless of what was happening to me, you know, the children would have been looked after and that gave me, you know, that would have given me a lot of peace of mind if we’d have gone down that route, but nobody actually said, Oh there’s pendants for this kind of thing if you’re, you’re ill And

Tom We felt as professionals ourselves that as health professionals these people should have had a few more solutions up their sleeve.

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Sophie had started to bleed at home, 3 ‘ weeks after her daughter was born. She went into…

Age at interview 38

Gender Female

Age at diagnosis 36

Sophie’ And a chap tapped me on the shoulder and point to my feet. My feet, and there was blood just pouring down and I was like, oh no. And at that point I was scared. I was getting scared, because I just couldn’t understand it. And I said, Right, get me a midwife [laughs]. I wasn’t moving. I just said, Get me a midwife. And they came in. They put me in a wheelchair, they got lines in my hands very quickly.

Tom’ They did respond very quickly didn’t they?

Sophie’ And

Tom’ Because you were in the right place.

Sophie’ Yes. And

Tom’ And they took you into theatre I think didn’t they?

Sophie’ No, not at that point, they took me back to my bed and got me into my bed and I had a massive, massive haemorrhage in the

Tom’ And you lost a lot of blood didn’t you, and at that point they realised it was a haemorrhage obviously and

Sophie’ Yes, I had a team of about ten people suddenly.

Tom’ Hm.

Sophie’ And I was having clots, massive clots of blood.

Tom’ Hm. And they were giving you

Sophie’ You know, everybody knows, everybody would know that wasn’t normal. And yes, and I was on Clexane at the time as well, so that didn’t help did it?

Tom’ That’s right yes. Yes. And I think they took you into theatre and realised it was a retained, piece of retained placenta.

Sophie’ That’s right.

Tom’ Which was causing the haemorrhage from the uterus and they, they cleared that. And you know, I sort of asked them when I turned up, I thought you know, they’d cleared all that. And then said, well and this is the thing, we never can tell absolutely one hundred per cent and you know, you know, they hadn’t cleared but then they

Sophie’ But all the symptoms that normally you would display.

Tom’ Hm.

Sophie’ I wasn’t showing them all, even though I was bleeding I was sort of saying to the midwives and nurses, Is this normal? Because it doesn’t feel normal to me. I mean I’ve had a baby before

Tom’ Hm. That’s right.

Sophie’ it doesn’t really feel normal to me these bouts of, of bleeding.

Tom’ Yes, that’s right.

Sophie’ And they were like, well you know, it seems normal to us, and so, Oh okay. But clearly at that point it wasn’t and I lost two and a half litres of blood that day.

Tom’ Yes. That’s right, well that’s what they estimated.

Sophie’ Yes, that’s what they estimated and they said, that was an awful lot of blood to lose. So…

Tom’ A massive shock to see obviously at first hand from your point of view

Sophie’ Yes.

Tom’ And then I arrived literally as they were taking you out of the ward and to theatre and saw you quickly, didn’t I, and they sort of explained to me as you went and yes. And then I saw you when you came, because you came back out of theatre into the recovery area, b

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A couple of days after the birth of her daughter, Sophie felt a severe pain in her chest and was…

Age at interview 38

Gender Female

Age at diagnosis 36

Sophie’ And I wasn’t ready to go home either because I just couldn’t really sort of function properly. And I remember lying in my bed and it was sort of in the morning time at about perhaps 3 days later after the birth

Tom’ Hm. Hm.

Sophie’ And I complained that I had a really sharp pain in my chest. It was, it was kind of around my shoulder and my breast. It was very close to my arm pit actually. And I just, and it just took my breath away. It was just like electricity going through, you know, it was really sharp and it just drawed me, I had to draw in my breath to sort of cope with the pain. And as it happened there was a midwife in there and she said, Did you have chest pain? And I said, Yes, you know, it’s probably, it’s probably just you know, from where I was lying or something. I didn’t really think it was something really serious. And she said, Oh I’ll go and tell the doctor. And the doctors came back and said, We need to send you for a scan. And then they tried to send me for a Q9

Tom’ CT.

Sophie’ No before that, they tried, a Q9 or

Tom’ Right.

Sophie’ That was a particular scan. I can’t remember the name of it.

Tom’ You inhaled some kind of marker gas didn’t you?

Sophie’ Yes. And they, they took me down to this, scanning area [laughs] and they wanted to put it over my face, it was a big like a gas mask and I felt so ill. I said, There’s just no way you can do that to me, because I’m slightly claustrophobic. So putting a mask on and then putting me in a small tunnel when I was feeling so ill. Because I couldn’t breathe. I kept complaining that I couldn’t breathe very well, and they said And I said, Look I just can’t go through with this. So I went back to the ward. The doctors came in, and said, Right we think going to have to scan you. We don’t want you to leave without being scanned because we think you’ve got a blood clot somewhere, then we need know.

Tom’ Hm.

Sophie’ So we agreed that I’d have a CT scan

Tom’ And I talked

Sophie’ Which has its risks in itself because its radiation. And they don’t usually like to do that to young people. But it was the only way they were going [laughs] to get me to go for a scan, and, and so it wasn’t too unpleasant, but it wasn’t, it wasn’t great, and And I sort of thought all this time, I thought I don’t really think it’s that [laughs].

Tom’ Hm.

Sophie’ But anyway, I know I was feeling really ill, and I knew that before I went in, I was in a wheelchair waiting to go in for the scan. I couldn’t even sit up straight and there was no one else with me. I just, I was sort of lopped over, like, feeling so incredibly ill

Tom’ Hm.

Sophie’ and I thought oh I just, I feel I could just fall down on the, on the ground. I felt so ill. So they did that, and the moment the doctor came in and he said, I could see his face was ashen, [laughs] and he said, Sorry but you’ve got a PE, which is a pulmonary embolism, which is a blood clot on the lung, and he said, It’s a small one, so you know, we stand a good chance of tackling this. But it means that you know, you wi

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Sophie and Tom reflected that although they said no when it had been offered, what they both…

Age at interview 38

Gender Female

Age at diagnosis 36

Tom’ Had they pointed me in the direction of counselling at that time I wouldn’t have taken it.

Sophie’ Yes.

Tom’ I would have gone, You must be joking aren’t you?

Sophie’ Yes. Well it’s difficult to know isn’t it? I remember when they said to me, Would you like counselling. And I thought no, no, I think, I think I’m clear on what’s happened and you know, and, and the risks and all that. I think I’m clear on that. And, but also you think well when are we going to have time to go for counselling, I can’t even get time to come and go to my appointments. I’ve got no support.

Tom’ Hm.

Sophie’ So if I’ve got no support I can’t really come to sort of the counselling anyway. So no, no, I don’t need counselling [laughs]. You know, there is that, that element to it.

Tom’ But yes in retrospect that was what was needed.

Sophie’ Yes, perhaps for both of us may be.

Tom’ I had it in my mind that I’d got to keep slamming away at the coalface to solve every time a problem was arising. And that simply wasn’t the case, you know, what we needed to do was sit back, have a bit of time together and then just you know

Sophie’ Collect our thoughts.

So yes, because you don’t really know what, what counselling can do, unless you actually to it do you? I mean people will say, Do you want counselling? Well I don’t know, what will it do for me? You know, will it help. No, because you sort of think well no because you know, I’ve already been through this. It’s not going to erase it, so what’s it going to do. But you know, may be it could of, I don’t know.

Tom’ You’re incredibly strong and able and you know, you haven’t had the issues I had with it all of sudden it catches up with me at certain point, and you know, perhaps more importantly, you had to deal with that. You had to deal with me, not being very helpful from time to time. And you know, deal with it effortlessly. But I mean that’s sort of what I’m getting at, you were ultimately far more capable to deal with it then I was.

Sophie’ I think I was just so relieved to be here [laughs]. I think that’s the attitude I took. It’s just like what. I’m not really complaining about this because I’m still here you know, and these people are a team of professionals that have helped me to still be here and I’m very grateful for that.

And you know, I’m going back to work and starting to put things behind me a little bit and moving on, and it was actually really good, and its actually been, you know, recently it’s been kind of in the mist a little bit really.

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