Investigating the long-term effects of pre-eclampsia

Pre-eclampsia is a fairly common pregnancy complication, but still too little is known about its causes and its potential long-term effects. A new study aims to correct that.

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Gemma Hicks didn’t know anything about pre-eclampsia until she noticed one day at school that she felt very odd and that her body was puffing up.  She carried on teaching as normal, putting it down to standing on her feet all day and being 35 weeks pregnant. After work she dropped by her mum’s. Her mum took one look at her and told her she needed to go to hospital. “It’s really scary to think that if she had not been clued up I probably wouldn’t have gone to the hospital; I would not have my daughter and I would not be here,” says Gemma.

When she got to the hospital her blood pressure was sky high. Within an hour of talking to her mum Gemma said she started suffering painful headaches. “I could feel my brain swelling,” she says.  She felt sick and passed out. “I was apparently asking the doctors and nurses to take my brain out. I don’t remember anything,” she says. All she recalls is having magnesium sulphate injected into both arms and being surrounded by doctors. She woke the next morning still high on the effects of the drugs. Her husband “looked like he had seen hell”. She had to wait for her blood pressure to go down before she had an emergency C-section. Gemma spent three weeks in hospital with her baby who was just four pounds four ounces.

Seeing flashes and stars

Elizabeth Penner noticed that her blood pressure was starting to go up in her second trimester. She recalls having visual disturbances, seeing stars and flashes of light which worried her, but, because it was her first time as a mum and she was older, she thought it might be normal.  One day her blood pressure was really high and she went to see her midwife. It was the beginning of the lockdown and she sat on her own waiting for the midwife to come.  She was sent to the hospital to get her blood pressure checked and told she had pre-eclampsia, but not how serious it might be. She was sent home and told to monitor her blood pressure regularly. 

One morning she took her blood pressure and it was really high. Her face was swollen and she felt ‘fizzy’. She was just over 30 weeks pregnant and was told to go to the hospital.  Things escalated quickly. Elizabeth was on her own as her husband had not yet arrived and could not get through to her. He thought the worst. Elizabeth was given magnesium sulphate. Within two minutes she was violently throwing up and was out of it for 24 hours. 

Eventually her husband arrived and a c-section was scheduled. She was talked through the whole thing and given lots of information. But after her baby Penny was born, that support dwindled significantly. Elizabeth was left alone in the birthing room with no lights and no button to call for assistance. Her blood pressure was still high, but she was told it would come down on its own, which is not always the case. She felt physically unwell, hungry and very emotional. While the hospital was very good with Penny, Elizabeth had no follow-up. Two weeks after she got home she passed out in the shower as her blood pressure was too low. On the first anniversary of the birth she had a panic attack and went to hospital because her blood pressure was high.

Poppy study

Both Gemma and Elizabeth’s experiences show how traumatic the experience of pre-eclampsia can be. The condition is one of the most common pregnancy-related problems, affecting between 1 and 5% of pregnant women. Around one in 200 women develop severe pre-eclampsia, which can be life-threatening for both mother and baby. Yet little is known about what causes it.

A project led by Cambridge University Hospitals NHS Foundation Trust and the University of Cambridge is aiming to address this and is looking for women who are thinking of starting a family. The POPPY study (Preconception to pOst-partum study of cardiometabolic health in Primigravid PregnancY) is funded by Wellcome and involves eight sites across the UK, seven of which will recruit participants – women who are intending to become pregnant for the first time. The seven are Imperial College London (Queen Charlotte’s and Chelsea Hospital), King’s College London (St Thomas’ Hospital), St George’s University of London (St George’s Hospital), University College London, the University of Cambridge (Addenbrooke’s Hospital), the University of Glasgow (Glasgow Royal Infirmary) and the University of Manchester (Saint Mary’s Hospital). The women will be tracked over several years to see how their pregnancy goes and what happens in the years afterwards.

The POPPY study is keen to have as diverse a range of participants as possible. The study will be discussed at two events at the Cambridge Festival. One is a drop-in event on 16th March and the other is a talk on 28th March.

Serious complications

Dr Carmel McEniery, principal investigator on the Cambridge study, says: “The POPPY study is unique in that it studies women and their heart health in a very detailed way, from before they even become pregnant. Our participants are then monitored throughout their pregnancy journey and beyond. The POPPY study may ultimately allow us to prevent pregnancy complications from occurring.”

It’s not just the reasons why pre-eclampsia happens that interests the team, but also the long-term effects. Pre-eclampsia is thought to be linked to high blood pressure in later life. 

Professor Ian Wilkinson, Chief Investigator for POPPY, says he regularly sees women in his clinic with high blood pressure who have experienced pre-eclampsia recently or several years earlier.  

He says: “The vast majority of these women require life-long drug treatment to control their blood pressure. I also see women who have developed more serious complications such as kidney disease, stroke and heart failure. Although uncommon immediately after pregnancy, such issues can occur many years later.”

He states that the most important thing for women who have experienced high blood pressure in pregnancy is to see their GP or doctor afterwards to have their blood pressure measured. If their blood pressure is raised he says women should be offered 24-hour blood pressure measurement, or a week of home blood pressure readings, and women who are confirmed as having high blood pressure should be offered a referral for assessment by a hypertension specialist. 

Sharing stories

Gemma’s daughter Maisie is two now and ‘full of beans’. She says her desire for children and her excitement at meeting Maisie got her through the ordeal. The trauma of the birth did not really hit her for three or four months when things had started to calm down.

Like Elizabeth, she describes her after care as ‘pretty shoddy’. The whole focus was on Maisie. Gemma had no checks except on her c-section stitches. She had to buy her own blood pressure monitor and Googled how to wean herself off her medication. 

She thinks there is not enough training for NHS workers in pre-eclampsia, particularly given how common the condition is and the fact that since 2020 eight women have lost their lives to it. 

Both women are keen to share their stories of the trauma caused by pre-eclampsia to help others in a similar situation and are backing the POPPY study. Gemma has since had another baby, but said she was very worried the pre-eclampsia would recur. She told everyone who would listen about it, had her hospital bag packed early, asked people if she looked puffy, took photos of herself, took her blood pressure regularly, emailed the figures to her midwife and went to the hospital to be assessed if she had any concerns. “It must have been so irritating, but it was the trauma,” she says. “I can’t control what happens in my body, but I can help make sure the same  thing doesn’t happen again.”

Gemma is appalled at the lack of attention paid to pre-eclampsia. “Women are just expected to keep calm and carry on and look after a little baby as well,” she says. She would also like the pre-eclampsia risk to be more widely known and mentioned at the 12-week check and she thinks not nearly enough research is done on the causes, which is why she is passionate about helping the POPPY project and will be on the project’s Cambridge Festival stall on 16th March to talk about her experiences. “I just want to do something to help women who might be in the same position as me,” she says.

Elizabeth says: “You go through so many different emotions. The more women share their experiences of pre-eclampsia the more the demand for knowing more about it will increase.”

*To find out more about the POPPY study and get in touch, click here.

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