Decision-making and relationships with medical professionals during hospital stays
While the women we interviewed were in hospital, decisions had to be made about their medical care. The clinical steps taken by doctors and nurses...
Not everyone we interviewed had emergency experiences. It was often possible to manage pre-eclampsia with medication, and the condition did not become more dangerous. However, some women we spoke to had medical emergencies that medication couldn’t resolve.
For those who had pre-eclampsia and HELLP syndrome, the women were at risk of seizures, strokes, placental abruption (a life-threatening condition for mother and baby where the placenta comes away from the wall of the womb), liver problems and heart failure. Their unborn babies were also at risk of serious health problems or death as a result of being starved of oxygen. This sadly happened to Munirah’s baby, who had severe brain bleeding when she developed pre-eclampsia. She was advised by doctors to terminate her pregnancy at 25 weeks.
Some women needed emergency caesarean sections when complications developed during their pregnancy or labour. Doctors often had to make the decision very quickly. Some women who had stayed in hospital for a while had been warned it could happen at some point; for others, it came as a shock. Some also experienced complications with anaesthetics and heavy bleeding. A few women continued to have or had late-onset of pre-eclampsia after giving birth which could become an emergency.
Women often spoke about a sudden realisation that things were getting more serious. Lyndsey remembered a ‘real ‘Oh my God’ moment’ and Claire talked about a point when everything ‘kicked off’. A high blood pressure reading or other test results could signal that a medical emergency was unfolding. This included test results showing liver and kidney problems, that the unborn baby’s heartbeat was dropping (sometimes called fetal distress) and/or low platelet levels in the blood. If these results were picked up at a routine GP or midwife appointment, pregnant women were often sent to hospital for closer monitoring and sometimes treatment. You can read more about these experiences in the section, ‘Realising there is a high blood pressure problem in pregnancy‘.
Sometimes women became so unwell they were sent to an Intensive Care Unit (ICU) or High Dependency Unit (HDU) where they could receive closer monitoring and organ support. Kay was in and out of ICU three times and had an emergency caesarean section to deliver her baby after the final time. This had a huge emotional impact on her: ‘You go down there, you don’t know if you’re coming back’. Sometimes if the baby needed to be delivered very early, the mother needed to be transferred to another hospital which had the appropriate facilities. Munirah was transferred to a hospital with expertise to deliver babies born earlier than 28 weeks.
The way pre-eclampsia does or doesn’t progress can vary widely. Sometimes the health of mother and unborn baby declined very suddenly; in other cases, things gradually became worse. Some women and their partners were in shock and denial about the rapidly changing situation. They often described feeling unprepared emotionally and practically for the arrival of their baby.
It could be very frightening to realise how serious the situation now was. As Tracey explained: ‘Your life is in someone else’s hands and there’s nothing you can do about it’. Women often felt a sense of panic amongst the doctors, midwives and nurses too – which added to their fear. But some women were impressed by how calm and efficient their doctors, nurses and midwives had been. Aileen liked having ‘continuous care’ from a midwife in HDU who knew her medical history well so that she didn’t have to keep explaining it. Having lots of medical staff coming into the room could be overwhelming. Tracey recalled ‘swarms of people appeared from nowhere’, and they didn’t offer her much reassurance.
Finding out that they would need an emergency caesarean section was a relief for some women who felt very ill. Mairi was glad someone was ‘taking control’. Claire was relieved when she was told she would need an emergency caesarean section, as she felt too ill and weak to keep going with a vaginal birth. However, at the same, some women felt worried about how the situation and next steps taken might affect their baby.
Most women said that, even during the medical emergency, they were kept informed about the unfolding situation. But there were gaps for women who lost consciousness. Kay passed out but remembered being wheeled into surgery: ‘the next thing I know, the ceiling was moving’.
The information given during emergencies could be quite brief. Aileen thought she wasn’t given much information because she is a neonatal nurse and so her doctors and midwives may have assumed she already understood what would happen after her baby was born. Julie thought there should be more information about emergency caesarean sections given at antenatal appointments and in classes so that women know more about what to expect.
Others said they were given a lot of helpful information when their situation became an emergency. For women who had known in advance that they may need an emergency caesarean section, there had usually been opportunities to meet a neonatologist or paediatrician to discuss their baby’s health. A couple of people were also able to have a look around a neonatal unit. But for some, lots of information at once could be overwhelming and hard to take in. Michael thought there was ‘possibly a bit of information overload [ as well as a] procession of one doctor after another’. Being upset and frightened could make it harder to process the information.
Some women remembered having to sign consent forms before their emergency caesarean sections. Samantha X had felt mostly calm until the anaesthetist explained the risks and ‘all of a sudden you’re having lots of forms shoved at you to sign’. Tracey felt it was ‘a real smack in the face’ having to sign forms about organ donation because it highlights ‘how serious it is and poorly you are’. Some people would have preferred the communication during their emergency situation to be more sensitive. Tracey remembered her doctor say that her unborn baby was ‘killing’ her, and Kay was told she needed an emergency caesarean section ‘or you die’.
Often the decision to perform a caesarean section was made very quickly. Betty described a ‘race against time’. Ruth X remembered that ‘everything was so unscheduled and unplanned and uncontrolled’ with the emergency caesarean section in her first pregnancy; for this reason, she opted for a scheduled (planned) caesarean section the next time.
Women who had emergency caesarean sections were often surprised how quickly the operation happened. Ruth X said it happened ‘very, very quickly’. You can read more on the site about the women’s experiences of birth, including both emergency- and planned- caesarean sections.
An emergency situation could develop quickly and suddenly, but there could also be delays and waiting involved. Kate thought she and her doctors had different ideas about how urgent her situation was – she was in a lot of pain but felt her consultant was slow in responding. For some women, their doctors were waiting on test results before taking a particular course of action. Other delays included having to wait for an operating theatre to become available or needing to postpone until a blood thinning medicine had worn off. However, waiting could be dangerous and doctors had to balance these different risks in deciding what to do next.
Partners were not always with the pregnant woman in the hospital when the emergency developed. Instead, some women had to call or text their partners and tell them what was happening. Samantha X and Aileen’s husbands nearly missed their emergency caesarean section births as a result, and Kelly’s partner didn’t get there in time to be part of it. Michael remembered getting a text message out of the blue to say the baby would be coming today: ‘That was when I realised that things were a bit more serious’. He was in shock and rushed into the hospital after a ‘frantic five minutes of ‘grab the baby bag”.
Sometimes emergency situations resolved quite quickly; other times, it took a while for the situation to gradually improve after treatment or another medical intervention. After giving birth some women were in recovery and they had postnatal care in hospital, before preparing to go home. There could also be impacts on the health of women and their babies. All of these aspects could be affected by having had an emergency medical situation related to pre-eclampsia.
For some women, it wasn’t until after the emergency situation was over that the fear and worry really kicked in. They reflected on the experience afterwards and realised just how dangerous it was. Some women had met with medical professionals in the weeks, months or even years after having pre-eclampsia. They often said these debriefing meetings had an emotional impact in terms of trying to make sense of what had happened.
Some women wondered whether the emergency could have been prevented. For example, Claire had been discharged 10 days before she was rushed back into hospital and thought perhaps keeping her in could have avoided it becoming ‘such an emergency at the end’. Julie wondered whether it would have made a difference if she had been induced the day before rather than when it had escalated ‘to the point where it was horrendous’. At the same time though, she felt grateful that she and her baby were ultimately okay: ‘if they hadn’t have acted very quickly I think it would have been a very different outcome. Very different’.
While the women we interviewed were in hospital, decisions had to be made about their medical care. The clinical steps taken by doctors and nurses...
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...