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Helen X

Age at interview: 31
Age at diagnosis: 31
Brief Outline: Helen X had a very straightforward pregnancy. However, at her 32 week GP appointment her blood pressure was found to be high. Her blood pressure was monitored over 5 days, then HELLP syndrome diagnosed. Her son was delivered by emergency caesarean and spent 3 weeks in the neo-natal unit.
Background: Helen X is a physiotherapist. She has one son and lives with her partner. This was her first pregnancy. White Australian.

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Helen X’s first pregnancy was going smoothly. She was exercising well and keeping healthy. Her care was a mixture of hospital and GP appointments. However at 32 weeks she started to feel increasingly uncomfortable, and found sleeping very difficult. At a routine GP appointment (on a Thursday) her blood pressure was found to be high, but she had none of the other usual symptoms for pre-eclampsia. Her blood pressure was monitored closely in the hospital for the first couple of days but because she was border-line they were unsure about whether to put her on the medication. 

Doctors decided against admitting her to hospital over the weekend but when she went back for further tests on the Monday, they decided that they would keep her in overnight to monitor her and try to make a decision about the medication. Blood tests overnight revealed that her liver was failing, so she was woken on Tuesday morning to the news that her baby was going to be delivered that day by emergency caesarean. She was able to text her partner to tell him the news and he rushed to hospital. After a morning of further tests and visits from lots of doctors, her son was delivered in the early afternoon, at 32 weeks, 6 days. 

Both she and her partner (Michael) described receiving a lot of information that morning, but not really taking it in, almost information overload. Their son was well, but too tiny to suck so sent to the neo-natal unit where he stayed for 3 weeks. Helen X was able to hold him for a few minutes before he was taken away. She had to stay in a high dependency unit (HDU) for 2 days while they stabilized her blood pressure and liver, and then another week on the post-labour ward. She was initially on the general ward but the staff were soon able to give her a side room, so she wasn’t surrounded by new mothers with their babies, which she really appreciated. Helen X went upstairs to visit her son regularly, giving him cuddles, changing his nappy and helping with feeds. She was able to establish breastfeeding eventually, expressing in the early weeks before he was strong enough to suckle. She also needed a nipple shield to help, which they were still using at 14 weeks, at the time of the interview. Helen X was discharged a couple of weeks before her son, so she visited daily during that time. Since he has been home he has made good progress, feeding well and putting on weight well. They are planning a trip home to Australia and then several months travelling in the United States 10 days after the interview. 
 

Helen X had high blood pressure at a routine antenatal appointment. She wasn’t worried about it at first and her GP agreed to let her test it again a few hours later. She was admitted to hospital for more tests when her blood pressure remained high.

Helen X had high blood pressure at a routine antenatal appointment. She wasn’t worried about it at first and her GP agreed to let her test it again a few hours later. She was admitted to hospital for more tests when her blood pressure remained high.

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And I went for a routine 32 week GP appointment one morning, 8.30 in the morning and said, “Your blood pressure’s too high.” And I said, “Oh well, whatever.” Because I’ve had, I’ve never been regular at having my blood pressure taken because of something that happened back when I was at uni and so I always hate having my blood pressure taken. And so, I sort of brushed it off a bit, and said, to him, “You know, I’m sure it’s okay.” Or whatever. He was like, “I really want you to go into hospital.” And I was kind of like, “Oh that’s a bit extreme.” And he said, “Look, we’ll agree because you’re a physio, and I trust you. You can go to work, but I want you to take your blood pressure once an hour for the next three hours. I’m calling you at 12. If it’s still too high, we’re having this discussion again.” And I said, “Okay, that’s fine. Fair enough.” So I went off to work and I took it for the next three hours and it was still very, very high, so we agreed that I’d go to the hospital. Which I did, and went to just the day assessment unit, where they did more monitoring of it. It was basically, it was still high, but borderline as to whether they’d medicate or not. So I think they said, if it was over a 150 on a 100 they’d definitely put me on medication. If it was well below that they wouldn’t bother. Mine was sitting pretty well bang on that. So they didn’t know quite what to do. So they took some bloods as well and basically said to me, “Look, we don’t know quite what to do with you. Come back on Monday, and we’ll see how things are then. Unless we call you and tell you that your bloods are off, and then we might ask you to come back in.” So that was fine.
 

Helen X recalled her GP explaining to a medical student that pre-eclampsia was more than high blood pressure and that there can be other symptoms.

Helen X recalled her GP explaining to a medical student that pre-eclampsia was more than high blood pressure and that there can be other symptoms.

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So I remember the GP saying, because he had, there was a medical student in that appointment with me. So I remembered them talking about it, and he was saying, “You know, the reason we’d send her to hospital, is because we’re concerned that it could be pre-eclampsia or you know, which… “And he said, “What is that?” You know, and she was like, “Its high pressure.” And he was like, “Well no, its not. Its you know, that’s a symptom of it. But that’s not necessarily what it is, and saying, its you know, its an unusual condition, auto immuney may be, but we’re not really sure. And your symptoms would be, you know, the swollen legs, headaches, blurred vision, the high blood pressure is one of them, and that sort of thing. Protein in urine, that sort of stuff. So I remember him sort of saying that. 
 

At 32 weeks into her pregnancy, Helen X agreed to stay in hospital overnight to check that medication to lower her blood pressure was working. It came as a shock when she was told the situation had become more serious and her baby would be born that day.

At 32 weeks into her pregnancy, Helen X agreed to stay in hospital overnight to check that medication to lower her blood pressure was working. It came as a shock when she was told the situation had become more serious and her baby would be born that day.

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And so anyway, eventually on Monday, they decided to put me on medication. And initially they said like, “We’ll put you on medication. We’ll just keep you in overnight, just to make sure the medication’s had an effect on your blood pressure. And then you can probably go home tomorrow morning.” And so anyway I said, “Fine.” So I spent my first night in hospital and I was actually quite happy, because they had the electric beds and I call pull my bed head upright and I was actually comfortable sleeping, and I was like this is great actually. I’m quite happy to be here [laughing]. And then the next morning was when it really kicked off like, so I’m sure it was about 7 in the morning. I just had this army of doctors come in and say, “You’re liver function is so far off, we have to delivery your baby today. It’s going to have to be by caesarean, because you’re too early for any of the drugs we’d give you to induce it to work. So basically you have to have a caesarean and your baby’s coming today, and that’s it.” So I was just [blerrr] [laughs] and then I wanted it, so obviously I’d been anticipating that someone would tell me my blood pressure was better and I could go home. And that’s what happened, and so obviously I just immediately called Michael and said, “Come here now, your baby’s coming today.” And then we just, the rest of that day, I think, we were just completely shell shocked. We just had a parade of, you know, anaesthetists, neonatal specialists, just every single specialist coming in and giving us information that I’m sure didn’t sink it at the time at all, and we just, you know, we were flabbergasted by all these people coming in and out and everything that was going on and all of the rest of it, and its really funny actually. I look at, we have photos from that day, and like one of the anaesthetists came in and he, Michael was all dressed up in the blues to go into surgery, and like there’s this photo of us and we’re both smiling about this day, and I just look back at it now and think ‘how were we smiling?’ [Laughs]. And we’re just, I think we were just shell shocked. We just had no idea of what had hit us, you know, it was so far from what we’d anticipated for the birth of our child. It was just bizarre.
 

Helen X was frustrated that clinicians often forgot to introduce themselves when they came to visit her.

Helen X was frustrated that clinicians often forgot to introduce themselves when they came to visit her.

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I think it was fine in terms of the information that we were given. I think the thing that really struck me was that a lot of people didn’t tell you who they were, or what they did. Like I’ve always felt for myself, I always make sure I do that for patients, because I just know when you’ve got really, like I deal with people with chronic illnesses, but when you’re dealing with so many health professionals, they all meld into each other, and you’ve no idea who anyone is. And to be honest that’s what would have happened, even if these people had told me their names, I wouldn’t have remembered them. But it just would have been nice at the time if the information that you had been given you knew kind of where it was coming from, who, why this person was telling you this. So that was one thing that sort of frustrated me a bit. Well what’s your name? What do you do? Why are you standing in my bedroom? You know, so that would have been. That would have made me feel more comfortable. But as I say probably in the long run, it made no difference, because I wouldn’t have remembered who they were. 
 

There were lots of people in the operating theatre when Helen X had an emergency caesarean section. One of her doctors sent an emergency page out saying she was bleeding, even though she wasn’t, to be sure it was treated urgently.

There were lots of people in the operating theatre when Helen X had an emergency caesarean section. One of her doctors sent an emergency page out saying she was bleeding, even though she wasn’t, to be sure it was treated urgently.

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I can remember going into the room and I can remember sort of looking at all the people and thinking oh my God, and I can remember thinking, oh this is getting a bit serious because one of the anaesthetists or someone came in and said, “Oh we’ve, we’re put out a page for maternal haemorrhage, because we want everyone to come here now. And so then they don’t listen to any pages unless we do something really dramatic, so… yes.” So there were all these people sort of came rushing in at one point, like almost with lunch on their faces kind of thing, going, “Where’s the haemorrhage? Where’s the haemorrhage?” And they were like, “Oh yes, no, its here, we just needed you to come now.” We need to do this baby now kind of thing [laughs]. I can remember lying there thinking, oh it must be getting serious now, they really want him out now, kind of thing. But they were all extremely kind of relaxed in terms of talking to me and that sort of thing and, and as I say, [husband] came in, he couldn’t stay for the surgery, but I remember him coming in, and they said, “Okay we’re going, you know, we’re going to start giving you something now.” And I can remember it. It being given to me, and almost immediately feeling woozy and saying, “Oh my God.”
 

Helen X didn’t mind recovering in hospital for a bit longer after giving birth. Her baby was in the Neonatal Intensive Care Unit, so being in hospital made it easier to see him.

Helen X didn’t mind recovering in hospital for a bit longer after giving birth. Her baby was in the Neonatal Intensive Care Unit, so being in hospital made it easier to see him.

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And as far as your health was concerned, why were you being kept in?

Oh blood pressure needed to come down still, and I guess some of it making it making sure the caesarean was healing okay and stuff like that. Yes, but I think it was largely the blood pressure thing that they were worried about and they were just making sure that those things were on their, you know, heading in the right direction basically.

And I guess also, I mean I, I probably could have pushed if I wanted to come home earlier, but in a lot of ways I was like well its really convenient. I’m on the first floor, the baby’s on the third floor, its going to get a hell a lot harder trekking from home which is half an hour away. I’m not in much of a rush to get discharged. So I didn’t really kick up a fuss. I was quite happy to sit back and go, still got my electrically operated bed [laughs]. I’m happy. I will stay here for a few more days thanks. So yes, because, I know that there was some, like you know, there was, obviously you chat to other mothers on the neonatal ward and stuff like that and some of them were bitching about how slow things were and how they really wanted to go home or whatever, but, and I just remember thinking, I think I might just take it for now. Someone else is cooking my dinner. Okay not what I’d like to cook, but its one less job to do and I may as well make the most of it. Recover as best I can and then we’ll worry about the rest, yes.
 

Helen X was sent to a High Dependency Unit immediately after her baby was delivered by caesarean section. She stayed there for two days, although her memories of this are blurry in parts.

Helen X was sent to a High Dependency Unit immediately after her baby was delivered by caesarean section. She stayed there for two days, although her memories of this are blurry in parts.

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And I can remember coming round and we were in high dependency by then, and I can remember waking up and [son] was in my left arm. I can remember holding him. [husband] said I was off my trolley and just completely woozy, but I do have a memory of him being in my arms, which is a really nice thing to have, and then I’ve got no memory of kind of the rest of that day, and the next few days are really, really hazy because I had to stay in the high dependency unit, because I had to have some very strong drug I think to get my blood pressure back down, so I couldn’t go and see [son] for about two days. And I was just in this high dependency bed. And it was an odd experience again, because I think again because of the drugs, you know, and I could tell people coming in and out and talking to other patients and things, and I just remember feeling really lonely there in my bed. And thinking I want them to talk to me [laughs]. I was obviously like I was fine and I didn’t, you know, I wasn’t a demanding kind of person so they never talked to me. They talked to the annoying woman over there [laughs]. And I was like talk to me, I’m lonely. But very odd time warped kind of days. It was very weird. And then eventually they pulled out the drains and let me go to the ward, and I just remember feeling like a little old lady hunched over with this scar, and everything and then we got to go up to the neonatal unit and finally meet [son] which was lovely of course and all of that. So then I was in for a week just recovering myself I guess. And I felt fine fairly quickly. Physically I guess I was in a bit of pain, but, I didn’t think it was too bad really to be honest.
 

Helen X’s baby stayed in hospital for two weeks after she was discharged. It was a stressful time but she tried not to let it show when she spent time with her son.

Helen X’s baby stayed in hospital for two weeks after she was discharged. It was a stressful time but she tried not to let it show when she spent time with her son.

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So it was another couple of weeks…?

Two, two after me, yes.

And was that a worrying time or…?

Not really I don’t, I guess because he was well and every time we went in we could see that things were getting better. You know, he was off all his tubes quite quickly and then the monitoring that he was on, got less and less, you know, every time we went in. For me there wasn’t any reason to be worried, he was well, I knew it was just about getting him breastfed. So it wasn’t, I didn’t feel sort of worried for his health at that point. Really it was just the stress of going there and back I find. And, and yes, we tried really hard not to bring any of that in with us when we went to see him. We tried to always be really positive with him, and happy and, “Hello. How are you. Have you had a good day? Been nice for the nurses. Blah blah blah.” You know, keep it really light, so he didn’t feel any of our stress. 

Because we noticed that around us a bit, you could tell the parents that were more stressed about the whole thing. Their babies tended to cry more and you could really sense that the babies were picking up what vibe their parents brought in. So we sort of tried to keep all our crap away basically. And be really positive for him. But yes, I wasn’t, I wasn’t worried about his health. He was doing good yes.
 

Helen X found it helpful when her husband used an analogy that there was not only one ‘correct’ way to look after their baby and so she need not worry too much.

Helen X found it helpful when her husband used an analogy that there was not only one ‘correct’ way to look after their baby and so she need not worry too much.

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And, but then Michael was fabulous, amazing. And he said to me, “You know, I think having a kid, like, its like a barbecue, everyone has an opinion on how to cook a barbecue, you know. But pretty much, most of the time, everyone can cook a sausage, even if someone said, do it like this or do it like that.” And I was like he’s so right, it is. Because you could hear all the nurses on the neonatal unit saying to each, even they didn’t agree on the right way to do things, and so we were there sort of feeling all thumbs, because we’d never changed a nappy before and every nurse told us a different way to do it and all the rest of it. And, and that to me was stressful, because I felt like I was doing it wrong, you know, and that sort of thing, and when Michael said that, I went, “You know, you’re totally right actually, there’s no perfect way to change a nappy.” Get over it. Just do it. Don’t worry about it. So that was really good. That made me feel a lot better actually and made those, the rest of those, you know, we had another two weeks of going to the unit every day to see him, while waiting for him to be ready to come home. So that made that much easier [laughs]. The barbecue.
 

Helen X had blood tests to check her liver was recovering in the weeks after she gave birth.

Helen X had blood tests to check her liver was recovering in the weeks after she gave birth.

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The liver just for some reason I guess stopped working and processing and so build up of junk in there I guess, and so just taking time to get all those levels back down. That is as good as my understanding is, because no one really said anything more, other than, your liver functions off. That was about much detail as the liver got.

I mean how do, how are they measuring its recovery?

Blood tests. 

Okay.

Yes.

And how regular are those?

They’re not any more. The first four weeks after I was going twice a week initially to have my bloods done and then it dropped sort of down to once a week and then once it hit normal levels, they were like, “Okay, you’re fine now. Off you go.”
 

Helen X’s baby was one of the healthiest babies on the Neonatal Intensive Care Unit (NICU). She was taking her son to a hospital check-up appointment soon but this was the first since he was discharged.

Helen X’s baby was one of the healthiest babies on the Neonatal Intensive Care Unit (NICU). She was taking her son to a hospital check-up appointment soon but this was the first since he was discharged.

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And he’s doing fine now?

Oh yes, he’s absolutely fine. As I say I think its luck really that he was as well as he was, and you know, there was obviously there was lots of other babies on the neonatal unit that we’d be peeking at and all the rest of it, and I think, you know, we were just lucky that he was a reasonable size and that he came out with no real issues for now, which is great. Yes.

And how often do you have to go and have him check at the hospital?

They’re really not very interested. I haven’t been back to the hospital with him at all. We’re actually going tomorrow for the first time, which is, six weeks past his due date. And because we asked them about, you know, how often will you want to see him and things for planning our travels. And they were like, “Well if he’s fine at six weeks really we’re not really very interested.” So... fine [laughs]. So yes, so he just has all these normal GP and health visitor stuff to… hm. 
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