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Kate

Age at interview: 35
Age at diagnosis: 34
Brief Outline: Kate’s pregnancy had gone very smoothly until she reached 36 weeks. She developed pains which she thought were indigestion, but soon became more severe. She had high blood pressure and doctors soon diagnosed HELLP syndrome. Her son was born by emergency caesarean and was fine although small.
Background: Kate is a teacher. This was her first pregnancy. She lives with her partner and son. White British.

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This was Kate’s first pregnancy. It was a “model” pregnancy until 36 weeks when she developed high blood pressure and severe pains in her chest, which came on very quickly. She texted the midwives overseeing her care but received no reply and after calling NHS Direct she went to her local hospital. 

Kate arrived in hospital at 9pm in the evening and was soon told that her blood pressure was dangerously high and that they were going to have to deliver her baby by emergency caesarean immediately. She was conscious when her son was born at 3am in the morning, and was able to hold him for 10-15 minutes. However her condition deteriorated and she was rushed to another hospital where they had an intensive care unit (ICU) to stabilise her blood pressure, liver and kidney function. She had developed HELLP syndrome.

Her baby was fine but transferred to a neo-natal ward in the original hospital as he was small and needed naso-gastric feeding. Kate was 2 days in ICU and 2 days in a high dependency unit (HDU) before she was allowed back to the original hospital to be reunited with her son. She then spent a further 5 days on the post-natal ward until her blood pressure had stabilised. She describes feeling very distressed and angry, and being in a great deal of pain during her stay. She was not allowed visitors, apart from her partner, so friends and family (who had travelled hours to see her) were turned away, despite the seriousness of her condition. 

Kate was distressed at the delayed bonding she felt she had with her son, and at not being able to establish breastfeeding as they had been separated for so many days at the start. At the time of the interview her baby was 14 weeks old and both mother and baby are doing well. But Kate was clearly traumatised by her near-miss experiences and the fear of being in ICU/HDU and the hospital generally. She described the hospital as a prison and herself as an inmate. 

Her GP has been supportive, although the follow up midwife care was poor. She was discharged by the community midwives without them noting down either her medication or the fact that she had had HELLP. Her follow up with the consultant took place at 10 weeks, and was helpful. He advised her to wait at least a year before thinking about another pregnancy, and that the next pregnancy would be under his care, and classed as high-risk. The consultant did not discuss with her the likelihood of HELLP developing again even though she has a higher risk of developing it in future pregnancies.
 

Kate thought she might have had one episode of visual disturbance – it got better soon afterwards so she didn’t think much of it at the time.

Kate thought she might have had one episode of visual disturbance – it got better soon afterwards so she didn’t think much of it at the time.

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I know that some people have visual disturbances and headaches. But thinking back on it, I had one episode of the visual disturbance. It must have been, well, only a few weeks prior to giving birth. I remember walking along, and then there was one line of vision here. I thought oh this must something in my eye, because I couldn’t quite see. I couldn’t see my hand to the left of me, and I thought that’s odd. That’s a bit weird. Didn’t really think anything of it. I thought well I’m obviously tired because I’m not sleeping very well. And then within about an hour it had gone away. I didn’t mention it to anybody because it didn’t mean anything to me. But possibly that was part of it. 
 

Kate was feeling unwell. She took her own blood pressure at home and it was high. Although initially dismissed by a midwife, she later went into hospital with severe epigastric pains and was diagnosed with HELLP syndrome.

Kate was feeling unwell. She took her own blood pressure at home and it was high. Although initially dismissed by a midwife, she later went into hospital with severe epigastric pains and was diagnosed with HELLP syndrome.

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I got to, well, about 34 weeks and I had what I thought was indigestion. I woke up at night with pains between my ribs. And I thought, well this must be indigestion. There’s nothing mention it to the midwife, because I assumed it was indigestion. I actually told her it [laughs] it was indigestion. I had one episode of slightly high blood pressure, but the rest of it had been fine, and then I was told by the midwife that I was so low risk that she wouldn’t need to see me for another three weeks. So I thought oh wonderful. And then ten days later it all went horribly wrong.

I’d been out for a meal the day before. I’d been swimming that evening. I’d been tutoring as well. And on the way home, I was thinking about dinner, as pregnant women always think about their next meal, and I thought, I don’t feel hungry. And I thought, oh this is a bit odd. Didn’t think much of it, got home and didn’t feel right. Something I couldn’t put my finger on. You know your own body don’t you? You know when something’s not quite right. And, I went on the NHS Direct website and I’d felt a bit swollen, my ankles were larger than normal, slightly uncomfortable. My fingers were slightly tingly as well. And I went down the check list of pre-eclampsia and I thought well, general feeling of being unwell, swelling, and I thought well that’s a couple of things ticked off. 

So I texted the midwife, and I said, “I don’t feel very well. Feeling slightly swollen. Possible pre-eclampsia?” And she didn’t reply for four days [laughs]. Which is a bit late by then. So I text the other midwife that I had a number for and she texted me back the next day. I didn’t want to call them because it was about 8 o’clock at night and I thought well, I’ll just sleep it off you know. So I called my partner. At the time we weren’t living together and I said, “I don’t feel very well.” And he asked me if I wanted him to come round, and I thought oh no, I don’t want to bother you. But something said, yes. Just you know, get him round. And then I have a blood pressure monitor, just as well and I took it and it was extremely high. It was 191/113. Which is high, and I thought oh gosh this is bad. 

And I took [partner], I took my partner’s blood pressure and that was fine. So I took mine again and it was still the same high reading and on the NHS Direct site it had also said high blood pressure. So I called NHS Direct and I said, “I’ve got this, this, and this.” And they said, “You should call the hospital.” So I was due to go to have the baby at a maternity ward. I was going to have drug free [laughs] water birth, you know, how it goes. And they put me in contact with the, with another hospital, and I told the midwife exactly how I was feeling and I told her the reading on my blood pressure monitor and she said, “Well it must be faulty.” So I said, “I’m really sorry. I feel really stupid. Sorry to have bothered you.” And I thought right I’ll just go and sleep it off. And then within about an hour I started getting pains here. And my partner said, “Right we’re going into hospital.” And I said, “No, no, no. I’ll be all right and you know, don’t want to make a fuss. I’ve four weeks to go.” So we went in and by then I was almost doubled over in pain. It was, oh it was incredible. Almost unbearable. I later found out it was epigastric pain.
 

Kate was transferred to another hospital and into a High Dependency Unit. She didn’t like being unable to look after herself and it took a while to sink in that her baby had been born.

Kate was transferred to another hospital and into a High Dependency Unit. She didn’t like being unable to look after herself and it took a while to sink in that her baby had been born.

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So yes high dependency [small laugh]. They were ever so good there. And I couldn’t sit up, couldn’t wash myself, didn’t really feel like eating. I was in a lot of pain. I was really swollen and not used to being a big person, it was quite horrible to look down and not recognise oneself. You know, having to lie in bed for four days, I don’t do that [laughs]. I’d love to do it now. But I was lying on a bed that undulated by itself. I think its to stop you getting bedsores. But not being able to push yourself up or reach out for things. Horrible feeling. Just everything is taken away from you. 

And obviously I didn’t see my son for four days. Such an odd feeling. I mean not expecting to have the baby so early and then I wasn’t a mother. I was just some useless person lying there. I did have some physio on the fourth day when they finally got me to sit up and I felt really sick [small laugh]. But I couldn’t walk anywhere because I was so wired up to the machines, so I could go about a metre and then I couldn’t move any further. Just the lack of dignity was tremendous. You know, people having to wash you everywhere and I could feed myself eventually, which is good. But they kept saying, you know, you’ll look forward to seeing your son. And I thought what son? What do you mean? Didn’t really mean a lot to me.
 

Kate developed some pains by her ribs just before she was discharged from hospital. She was reluctant about being readmitted.

Kate developed some pains by her ribs just before she was discharged from hospital. She was reluctant about being readmitted.

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I got home [small laugh]. I remember sitting at this very table, eating toast and drinking tea and just crying, with sheer relief. And I cried all the way home [laughs]. And my partner finally laughed at me, and he said, “What are you crying about?” “So I don’t know. I am just so happy to be alive, and be here.” Because I hadn’t been outside for eight days. And it was weird because it was, the world is still going on, and you think but it can’t. I’ve been stuck away in this prison. But anyway got home, got through it. Slept, actually did sleep luckily my baby was an angel. I think he knew that he just had to be, because [laughs] and then I woke up in the morning with a dreadful pain on my right hand side again. And I could hardly breathe. And I thought, oh what’s happening now? So I called NHS Direct and I explained and he said, “Right I’m sending an ambulance for you now.” And I said, “No, don’t, please don’t. I can’t bear it.” I couldn’t go back to hospital. I didn’t want to be an inmate again. And I thought if I go back in to A & E I’m going to have to explain my whole story again and I said, “No, honestly. I know you’re going to think I’m completely crazy, but I’ll got to the hospital myself and I’ll explain.” Because I had to go back in to get the injections anyway. So I went back in and I was very fortunate, because the two midwives who’d been there on my admission, it was their shift again, and I said, “Oh I’m here to get my Clexane injections and by the way I’ve got a bit of a pain here.” Now they said, “You shouldn’t have come here, you should have gone to A & E.” And I said, “I know.” But they also knew me thank goodness. So I was given an ECG to rule out any heart problems, and they suspected it was my liver which was distended because of the HELLP syndrome. So they gave me some co-codamol for the pain, but there’s basically nothing you can do for the liver, because its self healing. So I assumed I couldn’t have a drink or anything, and I didn’t get my Clexane injections because the fax hadn’t been sent [small laugh]. I thought no this can’t be happening. So I had to go in and get the Clexane the next day and I thought well my first two days out of hospital I’ve gone back into hospital. And the midwife the next day said, “You know, you should talk to the doctor about your problems.” And I thought, I can’t wait around for a doctor. I want to go home, because my family were coming. I hadn’t seen my family. And I thought, no I’ve waited long enough. I’m going to go home and spend time with the people who haven’t seen me and our baby.
 

Kate talked about naming her son as something she could “do” for him.

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Kate talked about naming her son as something she could “do” for him.

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My partner and I finally named him after four days, because he was called ‘male infant’ for four days and I thought ‘well, he can’t go through life with a name like that’. But I didn’t want to name him because, well, I didn’t really know him, you know, I wanted to look at his eyes and decide [laughs]. So we came up with his name and he became a real little person and it’s a big responsibility naming a child. So I thought ‘this was the first thing I’ve actually been able to do for you’.
 

Kate had to be taken to a different hospital after giving birth because she was so unwell. It was hard to bond with her baby and she struggled with the physical impact on her body.

Kate had to be taken to a different hospital after giving birth because she was so unwell. It was hard to bond with her baby and she struggled with the physical impact on her body.

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He was in neonatal.

In the same hospital?

No a different hospital a few miles away. But the nurses there were ever so good. They, they wrote a little diary from my son to me and of course that, that got me, that got me. So he wrote about what he’d been doing that day and but it was not real to me. And my partner showed me photographs and I actually said, “Have you got the right baby?” I didn’t recognise him. So... I didn’t have this maternal side to me, because I wasn’t allowed to have that. So I worried, I worried about when I’d see him again. Would he know me? Would he like me? Because I felt like I’d let him down. So yes, after four days, I finally went back to the hospital where my son was, and we were reunited and [upset] and I couldn’t really stand up without assistance, which is so frustrating because normally I’m really active and healthy and having to ring every time you want to get up. But I forced myself to do it. I probably shouldn’t have done, but, and then to have the catheter removed, they want you then to pass water and I remember ringing for the nurse and she gave me a jug. Oh God. And I was so embarrassed about it. But it was another step towards recovery. And after five days I finally had a bath. I mean I was disgusting. Absolutely disgusting. And there was a full length mirror in the bathroom and the nurse who helped me there she left me to it, and she said, “Now don’t look in the mirror.” But I did. And I didn’t recognise myself. Just elephantine bruises, the bruising, I don’t know where they’d come from. I don’t know if it was the caesarean or what, but it, I had bruises all down my thighs, all around my torso. And it was shocking. I couldn’t really bend very well, and didn’t really understand what, what had happened
 

There was a delay before Kate had the chance to tell her parents she had given birth early. It was hard not having visitors whilst she was staying in hospital.

There was a delay before Kate had the chance to tell her parents she had given birth early. It was hard not having visitors whilst she was staying in hospital.

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Oh and telling my parents that I’d had the baby. They were away in France, so they, they didn’t find out for three days anyway and then I called my Mum but I thought well, I’ve got to ask about the holiday first haven’t I? [laughs]. So I yes, I let her talk on and then I said, “Oh I’ve got a bit of news.” Told her. And she said, “Well we’ll come and see you in a few days.” And I thought, a few days [laughs] [grr]. Didn’t tell her the whole story. You don’t do you? You don’t tell you nearest and dearest how much you’ve been through. So I said, “Oh right. I was just hoping I could see you a bit earlier than that.” Unfortunately hospital policy is that no visitors are allowed, apart from your birthing partner. I didn’t know this [laughs]. And my parents turned up at my flat and they tried to call, and I said, “I’m really sorry, you won’t be able to come and see me.” And they had to go home again, and they live a couple of hours away, so it was a real wasted journey. And I thought, okay, I’m not that special, but surely, after all that I’ve been through, can’t you just make an exception. You know, I don’t need my Mum, I’m a big girl now, but it would have been nice. So four friends tried to visit as well. And they were all turned away. So after eight days, I was going stir crazy [laughs]. I didn’t throw anything, but I really did feel like it. And some of the nurses were so nice, but some it’s as if they didn’t really have time. I mean they didn’t have time I suppose, but they don’t have time to sit and listen to you. But I think I saw all of them [laughs] because I was on every shift possible.
 

After giving birth, Kate had some swelling for about two weeks and bruising which lasted six weeks.

After giving birth, Kate had some swelling for about two weeks and bruising which lasted six weeks.

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How long did it take for the swelling to go down?

Well I had anti embolism stockings, very fetching, they were thigh high ones. I kept them on I think for four days, before I said, “Can I have some other ones, because these are really horrible.” So I got them changed. It took about, I suppose two weeks for it to go down completely, but the bruising took about six weeks, and I started getting bruising on the back of my legs as well, which was shocking and my GP said, If it starts to go purple then you need to let me know.” And I thought, oh what shade of purple are you talking about, you know.
 

Kate’s husband continued to go to work, alongside juggling lots of other tasks.

Kate’s husband continued to go to work, alongside juggling lots of other tasks.

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And what about your partner how did he cope while you were in hospital, and …?

Well he was brilliant, actually. You don’t know what people are made of until they’re put in a position like that. He was still going to work. Still visiting the baby in neonatal. Still coming over to, to see me in Intensive Care and High Dependency, you know, bringing me books and sweets and things that I’d never eat, and never read. But it was the thought that counted, you know. He did all the practical stuff. You know, he cancelled all my appointments. He phoned people. He let people know. He just rallied people together and actually his parents were amazing, because they cleaned the house. So I got back, you know, the vacuuming had been done, and well there was no washing up in the sink to come home to, and… Yes. Its what you need.
 

Kate didn’t feel she had become more anxious about her son’s health or being with him all the time. She had been aware though that her son may be at increased risk of Sudden Infant Death Syndrome (SIDS).

Kate didn’t feel she had become more anxious about her son’s health or being with him all the time. She had been aware though that her son may be at increased risk of Sudden Infant Death Syndrome (SIDS).

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But I’ve been out with friends, and some people are amazed, you know. “Is this the first time you’ve left the baby?” “No, no. Its fine.” I’m not one of these clingy mums, you know, I don’t need to be with him every second of the day. I think it’s quite healthy for both of us that he sees other people as well [laughs]. I mean yes, I do have my moments of waking in the night and thinking is he okay? I’ll just go and check [laughs]. And now he’s started going through the night a bit longer, I think he hasn’t woken me up, is everything all right. Because it did occur to me, that because he was premature there’s a slightly higher risk of sudden infant death syndrome. Just because of being premature, being the weight he was when he was born. And it was at the back of my mind, you know. But I think he’s gone past that danger point.
 

After having HELLP syndrome, Kate was given more information about the condition. She didn’t relate what she was experiencing at the time to the symptoms though.

After having HELLP syndrome, Kate was given more information about the condition. She didn’t relate what she was experiencing at the time to the symptoms though.

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How have you found out about HELLP syndrome?

Well I was actually given some information. I think it was by the GP, because its linked, well possibly linked to pre-eclampsia. But it was rapid onset. But reading the facts and figures its quite scary how little is actually known about it. And how fast it can actually occur with, well virtually no warning signs at all. I know that some people have visual disturbances and headaches. But thinking back on it, I had one episode of the visual disturbance. It must have been, well, only a few weeks prior to giving birth. I remember walking along, and then there was one line of vision here. I thought oh this must something in my eye, because I couldn’t quite see. I couldn’t see my hand to the left of me, and I thought that’s odd. That’s a bit weird. Didn’t really think anything of it. I thought well I’m obviously tired because I’m not sleeping very well. And then within about an hour it had gone away. I didn’t mention it to anybody because it didn’t mean anything to me. But possibly that was part of it. And also what I’d put down to indigestion was actually epigastric pain [laughs]. But when people say, “Oh yes, indigestion so painful.” You think, wow that was painful. But you don’t know what pain means to people. 
 

Kate had support from her mum, friends and partner. Writing an email about her experiences was the easiest way to let friends know what had happened to her.

Kate had support from her mum, friends and partner. Writing an email about her experiences was the easiest way to let friends know what had happened to her.

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My mum came to stay which was a great help, because she did the night shifts for me. Which was just, Oh thank you so much. Mothers are wonderful people. You know, all past problems were thrown out of the window and then you were grateful for every bit of help, and friends offered to come round with the duster, you know. The friends started coming round and it was wonderful. And I relive the story, and I wrote an e-mail to people. It was mainly for me. I needed to get it out of here and onto paper, and I thought right I’m going to do a quick edit and then send it, and I thought right I’ve done it. And then wait for the replies to come, and the people said, “That’s the worst birth story I’ve ever heard.” [Laughs]. But it was helpful for me. It just, got it out of my head. And I think my partner was worried that I’d crash at some point, because I was on such a high, the adrenalin was kicking in. I had wonderful new baby. I was out of that institution. I was free to do what I wanted to do. The pain had gone. And everything was fabulous again, after all the trauma.
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