Mairi

Age at interview: 36

Age at diagnosis: 30

Brief Outline:

I developed HELLP syndrome 8 months (38 weeks) into my first pregnancy. After an emergency c-section, I was taken to Intensive Care. I had extra monitoring in my second pregnancy and did not develop any problems with high blood pressure.

Background:

My name is Mairi, I am 36 years old and a teacher. My husband, Stephen, also took part in the Health Experience Insightsstudy about high blood pressure in pregnancy. We have two sons, aged 7 and 5. I identify as White British.

More about me...

High blood pressure problems in my pregnancy

I developed HELLP syndrome in my first pregnancy. The first sign of something being wrong was at 8 months (38 weeks) when I felt a pain at the top of my bump. I started to feel sick and the pain continued. My husband (Stephen) and I called triage, who said it was probably indigestion but that we should come in for me to be checked anyway. My blood pressure was high and so I was asked to stay in hospital overnight for more tests. The next day, my blood pressure had dropped but I still felt very ill. I was admitted to stay in hospital after being violently sick. 

The doctors told me that I had a high blood pressure problem called HELLP syndrome. They said that I would need to deliver my baby soon. I was taken to the labour ward and induced with a gel put on my cervix. Nothing happened and so this process was repeated two more times. During the night, I started to get very rapid contractions and my unborn baby’s heartbeat was erratic. I had an emergency c-section – this turned out to be a good thing because our baby had the umbilical cord wrapped around his neck. I remember the hospital doctors and nurses being very calm which reassured me that they were in control of the situation. Our baby, Alex, was in good health. The doctors showed me my baby and Stephen was able to hold him.

High blood pressure problems after giving birth

I was immediately taken to the Intensive Care Unit after Alex was born. I didn’t realise anything was wrong until the next morning when I was told that I couldn’t take a shower or have anything to eat. I saw a very cautious doctor who eventually explained to me that I had ongoing problems with my liver related to HELLP syndrome. The doctors said I was very ill, but I felt fine and just wanted to be discharged. I was kept in hospital for three days, during which time I was closely monitored. Although my liver enzymes were not fully back to ‘normal’ yet, tests showed these were settling down so I was allowed to go home. I had to wait a long time to be given my medicines before I was officially discharged though. I saw my GP every two weeks for blood checks and had daily injections for six weeks to reduce my chances of a blood clot.

Having another baby

Stephen and I arranged to see a consultant from the hospital about three months after Alex was born. We wanted more information about the risks of another pregnancy in the future. This was a very helpful meeting and an opportunity to get answers. I was happy with the consultant I met with. I was under the same consultant’s care when I became pregnant for a second time some months later. I saw them fortnightly from 3 months (16 weeks) – the extra monitoring was reassuring but meant I had to arrange more time off work. I didn’t develop any problems with high blood pressure in my second pregnancy.

Information about high blood pressure problems in pregnancy

I hadn’t heard of HELLP syndrome before I was diagnosed with it. I knew a bit about pre-eclampsia though, as my mother had it previously. I had low blood pressure before I became pregnant. I had no other symptoms, but I don’t think my blood pressure had been accurately recorded by the midwife in the previous weeks and so it may have been high for a while. I was given a good explanation about HELLP syndrome when I was diagnosed, but then I received less information about what was happening to me after Alex was born. I didn’t realise how ill I had been until I looked it up online a couple of weeks after being discharged. I think it would cause needless worry if all pregnant women were warned about HELLP syndrome. However, I think it’s important that information about HELLP syndrome is accessible for those who need it. My advice to doctors and nurses is to be honest with women who want to know more about the condition.

Mairi’s diagnosis changed from pre-eclampsia to HELLP syndrome. She appreciated her doctors being direct about the situation.

How did you feel when you were first told you had pre-eclampsia or HELLP?

I was absolutely fine about it I think because I knew what it was because of my mum, and my mum likes to tell… like she'll be telling anybody about it. So, I knew what it was for the pre-eclampsia stage, and the doctor was very… the consultant was very good; I remember it was a lady; she was very good at explaining what HELLP was and it was the fact that these… my liver enzymes had started to break down; my body was breaking down my liver basically. And she was very clear cut of what it was. We are quite no nonsense people as well so we were like, 'Just tell us how it is; don’t dress it up as anything; we want to know the facts, and as long as we've got the facts we can deal with it.' So, she was… she… I remember her being really good, but I remember thinking that the information between then and after having [son’s name] wasn’t particularly clear but I don’t know if some of that is because they don’t want to tell you too much because they don’t know how much things are going to change. But we wanted to know more information but they were very cagey about, "Oh well it will depend "and," We'll have to see what happens," and I felt that was quite frustrating because it's my body and I wanted to know what was going on.

But I know they're not always going to tell you because they need to see what happens.

When there were delays with fitting an epidural (spinal anaesthetic), Mairi realised that the situation was time-pressured. Even so, she appreciated the efforts of everyone in the theatre to keep the atmosphere calm.

I think at that point you’ve got no real… you’ve got no knowledge to… I mean I just trust… I like people to trust me as a teacher, so I trusted them that they knew what they were doing. And I remember [doctor’s name] coming back in and he said to me, "I wanted to do this section but I'm not allowed; I've got to pass you on to my boss. It's too cut and dry and we've got to get it out now." But they couldn’t get the spinal in either and it took them four attempts for the spinal, and they got to the fourth one and they said, "We're going to have to phone for the senior anaesthetist to come," and she… just as he walked in she popped it right in, and I remember the consultant said, "Hurry up, get that in, get it in now, we've got to get going, we don’t have time for this." So, it's funny I do remember bits that it was quite time pressured, but then we had [member of staff] the orderly who was asking me what music I wanted to choose. So, I was aware that they were trying to keep it very calm and let's have some Christmas music, and it was all very calm but I remember the consultant getting really snippy with the anaesthetist saying, "Just get it in because we've got to go."

It was only after her second caesarean section which was planned that Mairi realised how quick her emergency caesarean section was.

I remember Stephen being on the left hand side of me just holding my hands. So, I was like this and I remember him holding my hand. And just…I mean we just chatted; it was over with before we even knew, and compared to the second time it was much faster. It was kind of like, "Oh it's a boy." We were like, "My god have you started?" So, I had like I remember not having any… I remember them doing the spray test and then the next thing Alex was here, and again in comparison to the second section it was much, much faster. It was like ages before [second son’s name] was actually born before the time it was like, 'Oh right, eventually he's here,' whereas with Alex it was definitely… I got the spinal, they did the test and then he was here.

Mm. And how did it feel that sort of quickness? So, it seems like…

I thought that was normal.

Things…OK

That was just normal to me, and actually when they… they were taking ages with [second son’s name]. I was like, "God, is everything alright?" but I realised that that was normal, and the speed at which they did the first one wasn’t normal. And again I have no idea what the time was; maybe it wasn’t that fast but I do remember thinking, 'My god like…' again because you don’t feel anything, it's a bit surreal, and I remember them like, "Oh, it's a boy," and I was like, "Oh my God." So and it's only in comparison to the second one to realise how quick that first one was.

Mairi was induced. Nothing happened the first time so it was repeated, but still nothing. A few hours later she started having very rapid contractions and her doctors advised that she should have a caesarean section.

So then I got taken into the labour ward and they gave me the gel on the cervix; they were trying to speed up natural labour – fine - did that, nothing happened. Everything else was really…everything else was fine. Then they did it again three or four hours later – still nothing happened. They did it again three or four hours later – still nothing happened. And it got to about ten/eleven o'clock at night and I was lying in the bed; Stephen jumped in the bed beside me because he was tired. So we were just lying sleeping, and about…must have been about one o'clock I started to feel contractions. So I'd woken Stephen up and I said, "Oh I'm feeling these contractions." He was like, "Right, quickly let's buzz." So we buzzed and the midwife came in and she brought the consultant with her, and straight away they were saying, "Is that OK?" and I was like, "Yeah." I was like, "Oh there's another one, oh and another one, and another one and another," and they were thinking, 'This is really fast.' So, I had the heart rate monitor on. I was OK but Alex’s heartbeat was about a 180, then it suddenly dropped to ninety. So, they all disappeared out the room and then they all came back in the room and they just said, "How would you feel about having a section?" and then they said, "In fact you’ve got no choice in this, you're having a section." So that was fine. We were rushed in for emergency section; within 20 minutes it was all over with.

Mairi went to Intensive Care after giving birth and was later transferred to a postnatal ward. The situation with her health was not clearly explained at the time to her and her husband, Stephen.

So, off we went and I was in Intensive Care until lunchtime and they were… we had a midwife to ourselves which I thought was normal; I thought everybody got a midwife to themselves; I thought this was excellent service that you get in a hospital. And I… that was fine and then for the rest of the night I had this midwife who was with me the whole time, and I was… obviously I didn’t see what was behind me but I was wired up to all… and I was aware that there was all these machines keeping an eye on me. And then I was desperate to get a shower, so by midday I was saying, "Can I have a shower?" and they were saying no, like you're out the game, you're here. But, well I'm hungry, can I have some tea and toast? No, wasn’t allowed anything. It turned out… they told me later on they were expecting me to have to go back to theatre; they weren’t expecting me to be fine from that point onwards. But I was very insistent so I did get the tea and toast after the consultant had been in to check that I was OK. So, this went on for a wee while, then eventually I was allowed to have my tea and toast. And then I was allowed to go back to the normal ward and I was back round there for visiting at four o'clock because I'm quite adamant when I want something, and I wanted to have a shower by this point as well, so they were quite, "Well, if you want to do it you can do it." And that was all fine; nothing else happened after that. But then I was never getting out, and I remember that was a Thursday and on a Friday a young doctor came to speak to us, and I can't remember what the conversation was but he was very cagey, and eventually Stephen just said, "Kind of cut the crap, what is going on with my wife? Nobody's kind of explained anything about this; what's happening?" and he said, "Well, her liver enzymes are all over the place; we can't get them to stabilise, so once they're stabilised you can go out; she can get out of hospital." Anyway we were saying, "Well that’s fine, but give us some sort of time scale." This just kind of it was an thing and I think that’s something I think would be really useful to people, like to tell them, yes this is what happens, but we'd no idea whether this was a short-term thing; was this a long-term thing, and I remember Stephen saying to the young doctor, "Right, you're not leaving here until you tell us; is this… is my wife going to be ill for months? Is this a couple of days, like how does this…?" And he's saying, "Oh they should come back to normal."

Mairi looked online about HELLP syndrome after being discharged home. It was quite frightening and made her realise how serious the situation had been.

Did you look anywhere else for that information?

Good old Dr Google. But it's quite a scary place when you go on it. If you type ‘HELLP [syndrome]’ in there, there's some horrendous things come up.

Mm mm. And why are they horrendous?

I think because you then realise that actually… the final point was I could have died. But at no point had that ever been explained – probably wouldn’t have been very useful at the time anyway, but I don’t think I ever realised how ill I was. And I remember we were speaking to my mum and dad and was going like, "Yeah, all's fine; yeah I have to stay in; my blood pressure's a bit high," and never at any point did we realise how ill I was. And then when I… I remember Googling and I got quite a shock when I Googled what are the possibilities, and how quickly it could change from one to the other. And probably very… the good thing was at no point was I ever aware of that in the hospital. 

It was all really just dead easy going and, which I suppose it was helpful at the time, but then I wanted to know when I came out what was this thing I'd had.

Mm mm. And was it mainly forums or did you find any high quality information about…?

No, it was just… I think I just typed it in, saw what was there, kind of read a few things and then I thought, 'I don’t think I want to know any more about this.' My mum had also done it and my mum had got quite upset actually, because she had Googled it when I told her what it was I had. And she…I remember her saying to me, "Do you realise how ill you were; you could have died from that," and I'm thinking, 'God what have you been reading?' and then I did have a look online and I thought, 'This isn't going to be helpful.'

Mairi felt that her doctors were not always very forthcoming with information. Her husband, Stephen, had to push for an answer at times.

And have you got any messages for healthcare professionals caring for patients with pre-eclampsia or HELLP?

Just to be as honest as possible especially if the patient's asking questions. Had it not been for Stephen really pushing the doctor on the Friday night, the day after, as to how ill I was… what were the expectations, I don’t know that we'd ever have been told any of that information but I distinctly remember him pushing to say, "Right, tell me what is wrong with my wife; tell me what the long term effects… is this long term, is it short term?" And actually if you knew… again it might just be my working in a way but I can manage if you tell me how long I'm going to be in this situation. And I know it's a bit of an unknown but if they were able to say to me, "This is what normally happens, and this is what we'd expect in you to happen, happen to you," then that’s easier to deal with than just having… being told nothing.

And it was that lack of information. I think looking back again they were probably waiting to see what was going to happen. But you know if they'd told us that they waiting to see what was going to happen, that would have been more beneficial than just not hearing anything.

Mairi and her husband had little time to process what was happening before their son was born.

Alex came out and they gave him straight-, they wanted to give him to me but they gave-, I said, “No, give him to Stephen”; I desperately-, I was worried they were going to start thinking I didn’t want him and I was desperate to let them know that I did want him, but because of the way my hands were sitting-. And I remember them giving him to Stephen and the two of us were just really ecstatic. It's funny because we didn’t cry, and I remember we both had a conversation, “Do you think we should we have cried at that?"” and I think just-, at the whole kind of emotion of what was going on, I think we were just relieved it was-, that he was there; he was healthy, he was happy. They said he was perfect; there was not one thing wrong with him. So actually by that point we weren't that-, we weren't that fussed. It was all-, it was quite nice after that.

Mairi talked to her consultant about the chances of developing pre-eclampsia in another pregnancy. This helped her recognise that what happened to her was serious but also that things could have been even worse.

What advice you received about your future health at that point?

Just told to… that they would have to monitor my blood pressure, but I wasn’t told to do anything myself, or that I needed to do anything.

It was just very much this was an almost like a freak thing that’s happened to you; it happened, you're fine now, let's just hope it wouldn’t happen again. But I remember at the time she did give us statistics of how likely it was to happen. I can't remember what they were but she was very clear about how likely it was, and I mean it must have been high because she said – I remember her telling me – that she would see me every fortnight after 12 weeks, and I was called up every fortnight after 12 weeks.

Mm mm. And were those statistics helpful for you or?

Yes, I think it made it real actually that this was not something that was just a big drama at the time. Actually it was a real thing that did happen that I'd come out the other end of and I was absolutely fine. Baby was perfect but actually it could all have gone horribly wrong. And she was very good at saying that like, "This has all been fine, but don’t think it would always end up like this." If things had gone differently it wouldn’t have been a nice thing to go through.

Mairi had HELLP syndrome in her first pregnancy. She had extra monitoring in her second pregnancy, which was time-consuming but also reassuring.

And we've talked about the frequency of the appointments, which was a key difference, was there anything else that was different about this pregnancy compared to the first in terms…?

They checked my bloods every time I went. So, instead of just maybe every four weeks or whatever, they were checked every time I went.

Urine was checked every time I went as well, and again that was much more than the first time because you maybe were only seen every four or six weeks; it was because I was going every fortnight they were checking everything every fortnight.

And how did you feel about this extra monitoring?

I knew it was for my own good but it drove me nuts. Because I was working and I had to ask for time off every fortnight, but I think that’s because I felt well myself, and I just know my body really well. So, like I knew I was ill and I went to the hospital, whereas I kept thinking, 'This is ridiculous…' and I remember saying to them, "This is ridiculous, I don’t even feel ill," but I think it gave Stephen peace of mind; definitely gave my mum and dad peace of mind. And I remember thinking, 'Mm, if this happens again with [second son’s name], or the second one, Alex might not have a mummy; actually I should…' It was… the stakes were raised because Alex was now here.

Mairi thought getting the amount of information right was tricky and depended on whether the person was a “worrier” or not.

I think it comes down to your personality. I wanted to know lots of information because then I could deal with it myself. But I think if you're a real worrier, the more information you're going to have, sometimes it's not going to be helpful. Like if I realise that this HELLP syndrome was a continuum; pre-eclampsia was here and kind of HELLP, death is here. I don’t know if you're a worrying type of person, whether that information's going to help you because that… you’ve got no control over that at the time. So, actually reflecting back on it, probably the fact that they didn’t give us too much information… because it's… my understanding of it is it's not cut and dried that this happens and then this… and then this it can jump from here to here. So, I think it's probably really hard for the health professional to be… I had never heard of it so I think that in itself was a bit of a shock when she said to me. Had she said to me I had pre-eclampsia at the time when I'd gone into hospital, I probably would have been like, 'Oh I know what that is, that’s fine.' But the fact that she said I had HELLP it was like, 'Wow, I've never heard of that before.' 

I think maybe being aware that there are other things out there that can happen to you, but I know lots of my friends would have worried that they were going to get that, and actually were never anywhere near having it, so I think there's a very fine balance of having enough information when it happens to you, or being given enough direction to where you can get the information – that would be beneficial. But to worry you needlessly beforehand I think would be silly.

Mairi appreciated her midwives being friendly and checking she was okay. She also had a lot of support from nurses with baby care.

Even during the night I remember a couple of midwives just coming and sitting chatting to me, especially with [second son’s name] as well, they came and they gave me the time and they were asking me if I had any questions or if I had wanted any help with anything, and the nursery nurses at the [teaching hospital] were fantastic, they were… Well, we were saying like, "Can you show us how to change the nappies, can you show us how to dress him, can you show us how to bath him," and I think the modern day thinking is that most people will know those things. But like we were both professional people, I had no idea how to change this baby. So, it was great that they gave us all the… because we asked they gave us all the information, but I don’t know that they'd give you it if you don’t ask. 

I think they try not to patronise you too much.