Pre-eclampsia and high blood pressure in pregnancy

Making decisions about labour, induction and birth

Pre-eclampsia or HELLP syndrome can affect how long a pregnancy lasts and decisions about labour and birth. These decisions depend on lots of factors, such as when the condition starts and how severe it becomes. The impact varied greatly for those people we spoke to; sometimes the mother was very ill and her baby needed delivering prematurely, other times the condition was controlled and it had little impact on the progress of her pregnancy.

For women diagnosed with pre-eclampsia or HELLP syndrome, doctors usually explained that the only way to stop the condition getting more serious was to deliver the baby and the placenta connecting mother and baby. This often meant cutting the pregnancy short if it looked like the pregnant woman or her unborn baby were becoming extremely unwell. Kate had HELLP syndrome and initially thought she would have to put up with her severe epigastric pain until her due date, before she realised her baby would be born early. Kay’s consultant was very direct about the fact that, in an emergency situation, she would need a caesarean or otherwise “you could die”.

The situation changed quickly for Samantha X – she went from expecting to stay in hospital for many weeks to being told she would need a caesarean section very soon.

The situation changed quickly for Samantha X – she went from expecting to stay in hospital for many weeks to being told she would need a caesarean section very soon.

Age at interview: 32
Sex: Female
Age at diagnosis: 31
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And I just started to prepare myself for being in for a long, long time. But obviously as the hours went on and I kept having these really serious spikes of blood high blood pressure, and there started to become more talk of, you know, every day that you can go, before you have to deliver is, is good, and I started to kind of have the realisation that, you know, it was, we were going to have the baby sooner rather than later. I suppose I started to, I think I was in denial for a while, because they said to us on the Saturday, “Would you like to see a paediatrician to come and explain to you about what will happen if your baby’s born at 29 weeks and I said, “Oh, no, no, no.” Because I just, I think I just assumed that I would, my blood pressure would go down, they’d be quite happy for me to go up onto the ward and it would still be a few weeks until I had the baby. And then when I had the second major spike in blood pressure and they asked again and I thought, actually, yes, I suppose we’d better speak to someone to… because I’d rather know than be caught unawares. But again, you know, even when they, even at the point where my consultant decided it was time to deliver, even sort of fifteen minutes before then, and all the talk was that I was going to go up onto the ward and so when she sort of said to me, “You know, we’re going to have to deliver the baby.” It still felt like quite a shock. Because I thought, you know, I just had it in my head that everything would be fine. But actually when I saw, when I saw the monitor and it said 205/110, I thought, yes, this isn’t good. This is really bad. So yes, it was really kind of mixed, mixed emotions, because you know, I was trying to get myself mentally prepared for a long stay in hospital. And then I was sort of thinking well what will happen if the baby’s born early and what will that be like and I just never entertained the idea that I wouldn’t have just a normal pregnancy and that I wouldn’t, I didn’t even know anything about premature babies. 

Betty had to sign forms consenting to her caesarean section, but she also felt there were no alternatives and that she was not in the best frame of mind to process information.

Betty had to sign forms consenting to her caesarean section, but she also felt there were no alternatives and that she was not in the best frame of mind to process information.

Age at interview: 38
Sex: Female
Age at diagnosis: 37
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How did they make the decisions?

Well I don’t think there were any options. It was get baby out as soon as possible. They were trying to gauge the approach to take to get baby out. We weren’t given the option not to do it, only forms to consent to doing what needed to be done.

So I didn’t think there were any options but I can't imagine myself ever saying, "No, don’t do that," because obviously the risk is that the baby's going to die.

And what was the role of your husband in all this? So, it must be a very challenging situation?

Yes, yes. He did ask about the blood pressure; what should it be. He kept a very close eye on it. He would answer a lot of the questions on my behalf and I'd correct him [laughs]. He didn’t actually look at the consent papers I don’t think, that was given to me which is right but equally I don’t think I was really in the right position to sort of digest it properly, but at the same time what options what are there? They can't… my husband shouldn’t be reading and signing on my behalf, and unless I didn’t want to go ahead with it there was little option other than to sign it. 

Dr Khan explains that doctors and midwives must balance different risks and benefits when advising women with pre-eclampsia about birth.

Dr Khan explains that doctors and midwives must balance different risks and benefits when advising women with pre-eclampsia about birth.

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Doctors and midwives make decisions every day to try and help women to choose when to have a baby but sometimes medical problems can make these decisions difficult. Often, women will fall pregnant and will try to construct a written or verbal birth plan. This will give ideas about the timing and setting of birth. But pre-eclampsia is a condition where usually the treatment is to give birth and, therefore, there are some circumstances under which a midwife or a doctor might recommend a baby to come out relatively early. Now, for the vast majority of patients, these decisions are taken when the baby is ready for the outside world and midwives and doctors use the phrase term to denote a gestation of 37 weeks and beyond. Now, at this time, the baby is not regarded as premature but if pre-eclampsia ensues at or after that time, it is often the recommendation to bring the birth forward and the commonest way to do this is to give medicines to start the labour, also known as induction of labour. However, in early onset cases, which are severe of pre-eclampsia or HELLP syndrome, the midwives or the doctors will sometimes give a different recommendation and they may recommend that the baby be born before 37 weeks. So this is a conscious decision for the baby to be born prematurely but the decision is taken on balance because the doctors and midwives are feeling for that individual scenario that, if the pregnancy were to continue, the mother’s wellbeing and the baby’s wellbeing would be put at risk. Such decisions can be difficult and the midwives and doctors always try their best to allow the parents to fully understand the decision and to participate in the decision.
Balancing risks

For some women, serious problems with pre-eclampsia or HELLP syndrome meant that babies born prematurely could be very unwell and unable to survive at such a young age. As Kay explained, having pre-eclampsia from 25 weeks into her pregnancy meant lots of extra risks for her baby compared to if she had developed it in the last few weeks before the due date. Some women met with a paediatrician or neonatologist who helped explain the impact and long-term prospects for babies born early. Women said this was really important to help them and their partners know more about what lay ahead – although, as Josie said, “nothing really prepares you” for the real thing.

But, having pre-eclampsia does not mean that a woman will definitely have her baby early or that the baby will be very poorly. Some women we spoke to had reached full term (9 months [40 weeks]) and a few had been overdue. 

When women are ill, decisions have to be made about how long it is safe to keep a pregnancy going. This can be a balance between, firstly, giving the unborn baby more time to grow and, secondly, delivering the baby before the health problems become very dangerous and potentially fatal for both mother and baby. Of the women we talked to who had been in this situation, they were usually already staying in the hospital and being monitored for signs of a shift in this balance. Julie gave birth at 41 weeks and thought the situation might have escalated less if she had been induced earlier.

Sarah describes her feelings when she realised her baby would be born at 7 months (33 weeks).

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Sarah describes her feelings when she realised her baby would be born at 7 months (33 weeks).

Age at interview: 37
Sex: Female
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He was born prematurely, at 33 weeks because I had pre-eclampsia, so he was born by emergency caesarean. 

And I remember at the time, because I was so sick and - I mean, when he was inside me I can honestly say that at some point I hated him. I felt, “My God, I just can’t stand being pregnant. I hate this. I just want him out. I don’t want him in there anymore.” And then when they told me that I had the pre-eclampsia and they were going to have to perform an emergency caesarean, I think the motherly instinct kicked in immediately, and I was, I was thinking, “My God, it’s too early. He can’t come out, he won’t survive.” And as soon as he was born, I mean, everybody was very concerned that I would reject him, but I mean, I didn’t. The minute I saw - I couldn’t, I didn’t see him straight away because they had to take him away, and take him down to the SCBU (Special Care Baby Unit) straight away. But it was just, I don’t know. I mean, I’m sure most people would say the same thing. As soon as you see this child - and he was a big boy. I mean, he was five pounds eight ounces at 33 weeks because of my diabetes. But he, you just want this, you just want to protect them and you, you wish that they weren’t going through it.

Josie thought there was a balance of risks in the run-up to her caesarean section. She had recently had an injection to prevent clotting, which meant delaying the operation.

Josie thought there was a balance of risks in the run-up to her caesarean section. She had recently had an injection to prevent clotting, which meant delaying the operation.

Age at interview: 45
Sex: Female
Age at diagnosis: 39
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But and then was an issue of the fact that there was no… there were no operating theatres available you know, so I was kind… I felt that it really did feel that night that we were up against it. And I a Doppler scan and there was a real clear sound of the dip in the heartbeat going much, much slower, and so I'd also only just, a few hours beforehand, had the injection for thinning my blood, so they said, "Well we can't do anything until, you know until you get over that anyway; until your blood starts to thicken up again." So, anyway this all went on for, you know most of the night until about four in the morning where they rushed me, or I rushed, I ran, to a… into an operating theatre and he was… yeah he was delivered in about four minutes.

I think that again, you know I just wonder about those decisions that were made at the time about [son’s name] welfare and my welfare, and whether they were having to… having to balance somehow the fact that I was needing this blood clotting thing to work. Had they given me blood clotting… probably I can't remember, I don’t know. That they were, you know just waiting for my blood count to rise was it? My blood count to rise, something, I can't… again I can't remember the technical aspects of it. And that was what was actually holding it up in the end. So, I was having, you know consent forms put at me; I had something in my arm here and something in my arm… you know it was literally… it was so much happening and I was on my own – it was… you know I'd had a lot of friends and family visiting all the time but here I was just on my own surrounded by a lot of doctors, a lot of nurses, a lot of midwives.

For Kay, seeing the neonatal unit helped her come to terms with the situation. It was still a huge shock but she also found it reassuring that there was an incubator and neonatal nurses ready to look after her baby.

For Kay, seeing the neonatal unit helped her come to terms with the situation. It was still a huge shock but she also found it reassuring that there was an incubator and neonatal nurses ready to look after her baby.

Age at interview: 42
Sex: Female
Age at diagnosis: 38
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And I was adamant she… well I didn’t know what I was having, but I was adamant she wasn’t coming out because I knew they weren't good risks. When I was taken back to the ward when I was still in the room of four, the hospital in [City], the paediatrician comes to see you and they take you into intensive care and they show you the room.

And Imogen’s little incubator was sitting – it was a giraffe, it was empty – and it was sitting, just waiting on her, and I think that’s when it really hit me, I'm really ill. This…I'm not going full term with this baby.

I'm kidding myself that I am because I was in denial you know, I feel fine. But then I was like, 'This baby's coming early and this baby's going to be tiny,' and I'd seen the size of the incubator and I thought, 'Oh, oh my goodness she's… she is going to be tiny,' you know and it was quite frightening.

But they show you, and there was no tiny babies in the ward at the time, but they have different stages – you know they’ve got an intensive care and then a high dependency and a family kind environment, the room that’s next down, and then they’ve got individual rooms and then they’ve got… they have got a family room where you can go and see where baby in preparation for coming home. And they went through it all with me and a lot of it I didn’t take in because I was… I was very much in shock. And I was under the impression that babies born at 24… over 24 weeks they can live can't they, and they're like, "Yeah, but there is a lot of complications and a lot of them don’t." And I think the media, because you see so many success stories, you think everyone's a success and actually, no they're not.

And I didn’t know that, I was kind of kidding myself that she was going to be just fine.
The best course of action was not always obvious and there might need to be discussion about benefits, risks and preferences between the different people involved (e.g. between pregnant women and their doctors and/or midwives, and amongst individual medical professionals). The ideal situation is when decisions about the best course of action are made in partnership and, ultimately, the woman must agree to any plan about when and how she gives birth to her baby. Some women we spoke to felt this was the case, but others felt their experiences highlighted room for improvement.

Deciding factors in birth choices

Some women were induced and some others had a caesarean section as soon as it was decided their baby needed to be born. A few women we spoke to had naturally gone into labour. These decisions could be prompted by signs that the pregnancy was becoming very dangerous for mother and baby – the mother might have extremely high blood pressure or blood tests results showing a serious problem (e.g. very ‘off’ platelets for Paige and Helen X indicating risks of serious bleeding; severe liver problems for Tracey and Emma). Claire was induced when she started to feel very unwell, but then given a caesarean section when her condition deteriorated with an irregular heartbeat, blood poisoning and fluid on her lungs: “there was just a million and one things that they were just like ‘right, we’re not happy’”. How the illness might develop varies widely. So doctors advised women about when it would be best to deliver their baby at very different stages. While Mairi reached 39 weeks, Aileen in her second pregnancy had her baby at the end of 30 weeks.

It was often signs that their unborn baby was struggling (sometimes called fetal distress) which led to a decision that a caesarean section would be the safest course of action. Some of the women found out that their high blood pressure had caused the placenta to detach from the uterine wall (placental abruption). As Betty’s doctors explained, this is serious: “if they don’t get the baby out quickly enough there won't be enough oxygen”.

Tracey was frightened when the decision was suddenly made that she needed a caesarean section. She had a general anaesthetic and so she was asleep for the operation.

Tracey was frightened when the decision was suddenly made that she needed a caesarean section. She had a general anaesthetic and so she was asleep for the operation.

Age at interview: 39
Sex: Female
Age at diagnosis: 29
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That was awful. You're just lying there; you're just in their hands; you just hope and pray that, you know they know what they're doing and you have no say in it; you sign the form saying that you, you know you want your organs to be donated and it's just… it's a real smack in the face as to, you know how serious it is and poorly you are.  So yeah I was just surrounded by the SCBU (Special Care Baby Unit) team and the anaesthetists and this was, you know three o'clock in the morning, so everyone just appeared in a whole rush and panics on their faces I could see which then panicked me. And no-one was really explaining what was going to happen. No-one was holding my hand to say, you know XYZ and before I knew it I was counting back from ten and I was gone, and I just remember sort of… I counted at least 20 people around me and I was just wired up, and it was the most scariest thing I've ever done, and never want to do.

Horrific.
Limited choices and reconciling expectations with reality

Their illness often meant women felt they lost control over birth options; this could be disappointing and frightening. While women had different preferences about the kind of birth they wanted (some had hoped for a vaginal delivery, including options such as water birth, and others had wanted a caesarean section), pre-eclampsia often meant that the reality of birth ended up being very different to what they had hoped for. Julie “was hoping for a natural water birth. I thought it was just going to all beautiful and lovely”. Mairi remembered asking her consultant if a water birth would be possible: “he looked at me in horror and said that there was no way I was going anywhere else other than a bed, and I remember thinking, 'It's a bit unfair,' but now I realise why”.

Lots of women said they had tried to keep an open mind about birth options, knowing that things may not go to plan. Aileen was happy to go with “whatever is best for my baby and for myself”. Betty’s preference had always been for a caesarean so she wasn’t “fazed” when she was told it would be. One consideration for some women was that a caesarean operation would mean that they could not drive for six weeks afterwards.

Dominie didn’t want to have a caesarean section as she knew she wouldn’t be able to drive for six weeks after the operation and this would make visiting her baby in hospital difficult. She opted for an induction and had a vaginal birth.

Dominie didn’t want to have a caesarean section as she knew she wouldn’t be able to drive for six weeks after the operation and this would make visiting her baby in hospital difficult. She opted for an induction and had a vaginal birth.

Age at interview: 25
Sex: Female
Age at diagnosis: 24
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So, on the Friday morning… I'd spent Thursday night there. The Friday morning they did a ward round, so my consultant came in especially and the consultant that was on, and they decided that they were going to section me on Friday morning.

That I was the top priority and I was going to be the first on the section list. And they were kind of talking about it amongst themselves, and they said, "How do you feel about that?" and I said, "I don’t want to have a section." For me it was because I lived too far away.

And I knew that he was going to be in special care and I knew I wouldn’t be able to drive for six weeks, so how was… that was all going through my mind – how was I going to get in and out from hospital to see him. So, I begged and they agreed to induce me. So, the hospital that I work at we use a drug that you… it stays in the cervix for 24 hours and after 24 hours they take it out and then they kind of reassess. So, I was given four hours with this drug on the Friday morning. So, they put it in for four hours, and then they had obviously gone out of the room and had a discussion, and they decided that at that point my blood pressure was under control, and that they would see what the 24 hours would do. So, I was really pleased about that.

And I'm really pleased with my decision because then on the Saturday they took it out, they managed to break my waters and within about four hours I'd had him.

So, I do believe that if I wasn’t a midwife and I didn’t know what I was talking about, that I would have had a section regardless, which I think is major surgery for, you know someone of my age that isn’t… wasn’t… it wasn’t necessary. I mean, if my blood pressure was amazingly dangerous at that point, and they were really worried about him, I would have done; I would have done anything. But in my mind, and through discussion with the midwife I felt like I was… that was the right path to go down. But I had not been a midwife things could have been very different yeah.

Hanna wanted the expert advice of the consultant she saw when she was first admitted to hospital. It was also helpful to talk to her mum about the options available.

Hanna wanted the expert advice of the consultant she saw when she was first admitted to hospital. It was also helpful to talk to her mum about the options available.

Age at interview: 39
Sex: Female
Age at diagnosis: 37
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So that was on the 16th of February, when I went in to have my normal check. By the 26th, we’re talking about having, delivering the baby early because they didn’t like what was happening to my body. And then, the worst thing was, I was hearing from the young doctors and I didn’t see that female consultant ever again. That annoyed me a little bit because I felt I wasn’t I wasn’t important enough for her to come round again ever since that first visitation, that was it and I felt very annoyed. So on the 26th, I remember a young female doctor that came in to see me. I was not particularly nice to her. I said, “I want to see that consultant. Why is she not here, especially when she told me that we needed to deliver the baby early?” So I demanded to see the consultant and it wasn’t it wasn’t until the 27th, morning of the 27th, she came to see me and I said to her, “I want to hear it from you, what do you, is the best option?” And she said, “The way you are, yes, we need to have this baby delivered and options are either caesarean or we’ll induce you but we prefer the caesarean.” And I said, because of the hidden, I’ve heard about people having caesarean and always people that I know of, like relatives and they’ve never had a good experience with it.

So, when I told my mum, she advised me against it and she said, “Go for natural birth. They’re there, the medical experts to help you and you, they wouldn’t give you those two options if they weren’t safe for the baby to be delivered naturally.” So I said, “I’d rather to have a natural birth.” So they said, “Okay. We’ll wait until the 35th week.”
You can read more about women’s actual experiences of labour, induction and birth here.

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