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Helen

Age at interview: 31
Age at diagnosis: 31
Brief Outline: Helen 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 is a physiotherapist. She has one son and lives with her partner. This was her first pregnancy. White Australian.

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Helen’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 over night to monitor her and try and 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 - Interview11) 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 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 stabilised 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 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 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 had a normal pregnancy but her GP was concerned when she started to develop high blood...

Helen had a normal pregnancy but her GP was concerned when she started to develop high blood...

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I was having a completely normal pregnancy. I felt well. I was going to yoga, I was going swimming 2km a week, everything was completely normal. I was having a lovely time. And all the rest of it.
 
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. 
 
So I came home and then I got a call the next morning, Friday morning, now saying, “Your liver function’s a bit funny. Can you come in?” And I said, “Fine.” So I went in and we pretty much had a repeat of what happened on the Thursday. Essentially, the same things all happened again, except they talked about admitting me, but then decided not to, because they said, “It’s the weekend; nothing’s going to happen over a weekend. Why bother putting you in hospital when we can’t do any tests and things. So you may as well go home.” 
 
And the only thing they did that was different, was they did an ultra sound of Caleb just to make sure that his growth was okay, because they were suspecting pre eclampsia by then and so, apparently, their grown can be affected to they wanted to check that. But that was all completely normal, which was great. So I went home for the weekend. And had a pretty horrible weekend. I felt really, really uncomfortable. I just remember this tight pain kind of here, right under my boobs and trying to work out, you know, what that was, whether that was my liver being quite up high and that was the pain, and that’s what I thought it was, but God I was uncomfortable, and I couldn’t sleep and I just wanted it to be Monday, because I just wanted some kind of resolution. You know, this hanging around was terrible, because no one could decide what to do and it was horrible. 
 
So I was quite relieved when Monday morning came and I went in again, and they said. I mean the blood pressure was still the same. They still didn’t know whether to medicate or not, because it was still borderline and I had no other symptoms of pre ecl
 

Helen developed HELLP syndrome and her son was delivered early by caesarean. She and her partner...

Helen developed HELLP syndrome and her son was delivered early by caesarean. She and her partner...

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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 it’s really funny actually. 
 
I look at, we have photos from that day, and like one of the anaesthetists came in and he, [husband] 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.
 
So yes, we had all that, and it took a lot longer than what they thought. They sort of wanted me in surgery as quickly as possible, but basically my platelets were very low and they wanted to know just how low, before they took me into surgery. They’d already pretty well decided that they had to do a general anaesthetic rather than an epidural because of the low platelets, but they wanted to know exactly how low before they went in and basically the lab lost the result, so they had to redo it. So it all dragged on until the afternoon, basically.
 
So yes, and then, and everything was fine. I mean everyone was pretty relaxed. [Son] was being monitored and stuff and at one stage I think his heart rate had just started to slow and we could tell that they were starting to get a bit panicky that these results hadn’t come back, and anyway, they eventually decided to just go ahead anyway, I think. And so, we went into the theatre, which again we were just surrounded by people and, and all the rest of it. And so then, yes, then they knocked me out and did it, and which was weird. Those drugs are so powerful I never felt any… I felt it was just bizarre. I was saying some… I can remember some of the things I was saying. They were strange and I was just off my trolley, but anyway [laughs].
 
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. 
 
 

Helen had HELLP syndrome and her first son was delivered early. Leaving HDU was a step forward.

Helen had HELLP syndrome and her first son was delivered early. Leaving HDU was a step forward.

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I was very happy to leave HDU. Not because of anything about it. Like the staff there were fantastic. But just because it was a step forward. And then the ward, was the ward that I’d been on before I went up to HDU. So I kind of knew some of the staff already, which was quite sort of nice to come back to people, and they were good at being sensitive as well I think, like the hospital’s really busy, so there’s lots of four bed wards and then some single rooms. And so the first night I was back, I was in a four bed ward, but there was no one else in it until about I don’t know 5 a.m. or something when someone came in. And that was a woman whose baby was on the neonatal unit as well. And so that was good.

 

Helen was initially put in a 4-bed ward, but found this upsetting as her son was in the neonatal...

Helen was initially put in a 4-bed ward, but found this upsetting as her son was in the neonatal...

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And then the next day, the ward, the four bed ward was completely full, and I can remember being back there at some point in the afternoon and I could hear these normal babies you know, crying and these mothers having [laughs] you know, normal Mother worries, you know, about oh shall I change his nappy now, or do I use wipes? What do I? And I was just lying there think, oh it’s not fair, I don’t have my baby, you have yours, and that was really hard. And fortunately the staff had obviously had experience of that before and they put me in a side room. So I went back up to the neonatal unit at the some point in the afternoon. And when I came they were like, we’ve got you a side room quietly move your stuff, let’s go, kind of thing. Which was great, because I think having a night of being woken up by other people’s babies, when mine wasn’t there would have been horrible. Oh it would have been awful. So I got a side room.
 
And also the other good thing was it was really hot and stuffy in there, the heating always felt too hot, and so in my own room, I could open all the windows [laughs]. I was much happier and much more comfortable in there and yes, I knew I’d got to stay in that for the rest of the time. Which was great.
 
So yes, and I think yes, the staff were, as I say I think they were quite sensitive to the fact that it would have been really harsh, you know, and tried to do the best that they could to, to alleviate that, you know, as much as possible in a busy ward and all the rest of it. Yes, and they were nice, you know, we had good chats all the time. I guess because I was a physio and I had some understanding of the NHS, you know, we could moan about difficult things in the NHS together or whatever, so yes, I always felt treated like I was an adult having a conversation and not a real patient that needed to be patronised or anything like that. So that was nice, yes.
 
 

Helen described the exhaustion of travelling to the hospital every day to visit her son, while...

Helen described the exhaustion of travelling to the hospital every day to visit her son, while...

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But yes, so then I got discharged and go to come home, which was fantastic. I’ve never been so happy to see this couch in my life. And then, so that was sort of the next phase of two weeks of going in to see him. He was well the whole time, which was really, really good. He was on, he sort of had a bit of oxygen and a heated mattress. I think it was about five days after he was born, and then after that, it was essentially nothing, other than he needed to develop a sucking reflex and to be able to eat for himself. So that, that was really good that he was healthy. And so yes, so we just had the exhaustion of going to and from the hospital every day, sitting in that horrible institution kind of room all the time, and that was exhausting. And, and we also fiddled with that as to like what was the best way to work this again, you know. Because you feel like you want to be there all the time, because you’re the child’s parent, and you really want to be there and all the rest of it. But then you think, what am I doing here, you know, like he’s asleep half the time. There’s no point me standing here, watching him sleep when I need to rest. You know, I’ve physically been through a fair bit and this child’s going to come home to me, and if I’m useless when he comes home what’s the point. So yes, so we sort of I think eventually decided to kind of go in for a reasonable chunk of the day, but then come at a reasonable hour and not feel like we had to go back and stuff like that. And again, I think there were some nurses that were better about then than others. Some made you feel like, oh you’re not coming back for a night time feed, you know, and all that. Well no I’m not [laughs] I’m going to sleep while I can, thanks very much. 

 

Helen had a follow up appointment with a professor of medicine who explained to her the chances...

Helen had a follow up appointment with a professor of medicine who explained to her the chances...

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And was there a sort of final sort of round up appointment that you had with the doctor?
 
Yes. I had two appointments four weeks after everything. So one appointment was with a professor of medicine sort of person. I knew I must have been sick when I got the professor. Oh, I was sick [laughs]. Which was where they said about the you know, 20/30% chance of it happening again, and they said, “You know, your liver’s back to normal, but your blood pressure’s not. Carry on.” Sort of thing. And then two days later I had a kind of a standard follow up with the midwives at the hospital, which was more about, you know, is your scar healing okay. What are you going to do about contraception blah, blah, blah. That sort of standard kind of stuff again. And so, and then yes, that was it, pretty much.
 
And do you feel that that’s been enough so far? Do you feel you’ve had enough information and enough follow up?
 
Yes. I think so. I mean I haven’t, you know, everything’s been fairly straight forward and, and normal in terms of recovery. I haven’t felt unwell. I haven’t had any problems. So, I don’t feel like I needed I anymore and then, obviously because at the GP as I said, it was [son] and things like that so, I felt like I could link back in there if there’s more to be done. Because at the moment, it’s kind of well it’s all fine except the blood pressure which the GP can probably deal with just as well as, as they can at the hospital.
 
 

Helen worried about the risks of having HELLP syndrome again.

Helen worried about the risks of having HELLP syndrome again.

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But I mean the thing that concerns me more about it now. I think at that time I was just such a whirlwind. I don’t think I processed very much at all. But the thing that worries me now is that if we want to have another child, they’ve said that the risk of it happening again is 20 to 30% which is much higher than what I’d like. And that’s the thing that concerns me more now, that I know what it was and what we went through. The fact that there’s no real idea as to what they can do, why it happens and all that sort of stuff that makes me think. You know, now that is of more concern than it was at the time I think.

At what stage did they talk to you about that? And the risk of it happening again?
 
That was at the four week follow up appointment after it all happened, yes. So, and they said that you can take low dose aspirin when you sort of first initially get pregnant and that’s supposed to reduce the risk. But I mean, I just, I just don’t like the idea of it all happening again. Just that we won’t be so lucky a second time. You know, what happens, if it happens earlier, what if the baby’s not as well? What if, you know, my liver recovered in four weeks this time, what if it takes longer or doesn’t recover next time? ' What if my blood pressure remains screwed and I’m high risk of strokes? Blah, blah, blah. I don’t like all those ‘what ifs’ really.
 
And are those what ifs that they raised with you?
 
No, no, that’s my head.
 
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