My pre-eclampsia story: a call for more awareness

 

In May 2023, at her 38-week midwife appointment, Rosie was diagnosed with severe pre-eclampsia. In the weeks leading up to this, she hadn’t been feeling well. Rosie had raised concerns about her symptoms but they were dismissed and initially no further action was taken. “This is the challenge with pre-eclampsia”, writes Rosie, “symptoms can mimic typical pregnancy experiences, like swelling, headaches or fatigue – which makes it easy to overlook.” In light of this May’s Pre-eclampsia Awareness Month, Rosie aims to raise much needed awareness of this condition.

Promoting improvements in healthcare practices relating to pre-eclampsia and encouraging clinicians to prioritise research, that’s what the campaign behind Pre-eclampsia Awareness Months aims to achieve. With the recent, devastating decision to reduce national Service Development Funding for maternity services from £95 million in 2024–25 to just £2 million in 2025–26, there has never been a more critical time to raise awareness of this pregnancy complication.

Consequences
Pre-eclampsia originates with abnormal implantation of the placenta and the disruption of normal placental development sets the stage for the condition to develop. Our baby was conceived through shared motherhood IVF – my wife's embryo was transferred into my uterus. We didn’t know this until recently, but using a donor egg increases the risk of pre-eclampsia two to threefold, due to an increased inflammatory response to the fetal antigens. The desire to both be involved in the creation of our family had consequences though – I became unwell and we both missed the birth of our son. 

Challenge
In May 2023, at my 38-week midwife appointment, I was diagnosed with severe pre-eclampsia. In the weeks leading up to this, I hadn’t been feeling well. I raised concerns about extreme swelling in my hands, feet and face at an earlier obstetric appointment but they were dismissed with a comment that I “looked great”. At the time, my blood pressure was within the normal range, so no further action was taken. This is the challenge with pre-eclampsia, its symptoms can mimic typical pregnancy experiences, like swelling, headaches or fatigue which makes it easy to overlook. Diagnosis relies on two clinical indicators – proteinuria and hypertension – but both can also occur in pregnancy without progressing to pre-eclampsia. We simply do not know enough about this condition, which I see as a systemic failure rooted in a patriarchal healthcare system that has long deprioritised women’s health.

“I’ll never forget being separated from my wife and being put to sleep, surrounded by strangers and feeling very unsafe”

The only ‘cure’
Currently, the only ‘cure’ for pre-eclampsia is to deliver the baby and the placenta. In many cases, especially when the condition is severe, this can mean delivering preterm – a delicate and agonising balancing act between the risks of continuing the pregnancy and the complications associated with prematurity. Pre-eclampsia contributes significantly to preterm birth and can result in a newborn requiring support in the Neonatal Intensive Care Unit. My heart goes out to every family navigating this uncertain path.

Aching for a different story
While our baby was ultimately born at term – 38 weeks – we still found ourselves in NICU. Once I was diagnosed, the response felt immediate and inflexible: induce, break waters, start syntocinon. There was no pause to consider my specific circumstances, no conversation about alternatives either – just a cascade of interventions. This led to our baby experiencing bradycardia (slow heart rate) and I was taken to theatre and put under general anaesthetic so that he could be delivered quickly. I’ll never forget being separated from my wife - in the UK, it’s standard practice not to allow birth partners into theatre if the birthing person is under general anaesthetic - and being put to sleep, surrounded by strangers, feeling deeply unsafe. I catch myself thinking about how I wasn’t awake to see my baby being born and it hits me like a tonne of bricks: I ache for a different story. The shame of not being there in his most vulnerable moments has been intensified by the narrative promoted by people who claim that pre-eclampsia can be avoided through the right diet, supplements, or lifestyle. This message is not only misleading but it’s deeply unhelpful for those of us who have lived through pre-eclampsia and already feel as though our bodies let us down, especially when emerging research suggests that male-factor contributors such as genetics and health, also play a role.

“I don’t consider pre-eclampsia as the reason for my traumatic birth but rather the system’s response to it”

Protocols
I don’t consider pre-eclampsia as the reason for my traumatic birth but rather the system’s response to it. From the moment I stepped onto the labour ward, I became a patient. Protocols were done to me and I was never given a choice to participate in my care. I tried to advocate for myself, asking whether a caesarean might be the better option because things didn’t feel ‘right’. I was attached to monitors and unable to move around. I knew labour wasn’t going to progress that way but I was dismissed and even encouraged to get my waters broken. I regret not pushing harder, I went completely against my intuition. It’s hard to reconcile that the only recommended path for me was progressing labour artificially and rupturing the membrane protecting my baby, given the nature of pre-eclampsia is reduced blood flow and oxygen to a baby in an already vulnerable position. I don’t deny that I was unwell and medical intervention was necessary in my case but if I’d have been listened to and been given more information, more choice, more personalised care, I might have been awake to see my baby being born.

Reaffirming
The 2025 theme for Pre-eclampsia Awareness Month is Ask Me About Pre-eclampsia. I hope that by reading this, you understand a little more about the complexity of this condition and the impact it can have. My wife is now pregnant with our second child and we decided to stick to the plan that we embarked on several years ago and transferred my embryo into her uterus. We know the absolute risk of her developing pre-eclampsia is low and by monitoring things at home, we’ve found a sense of control that was missing before. The inclusivity that shared motherhood is rooted in is too powerful for us to walk away from and we know, whatever happens, this time will be different. We’re being supported by an incredible doula and recently completed a practical and realistic birth preparation course. A course I had been looking forward to joining since the birth of our son and it has been reaffirming in ways I didn’t expect.

“You are not a condition to be managed, you are a person deserving to be supported, held and respected”

Creating space for real change
If you find yourself in the disappointing position of being diagnosed with pre-eclampsia, please know that you still deserve agency, autonomy and active participation in every decision made about your care. You are not a condition to be managed. You are a person crossing a profound threshold and you deserve to be supported, held and respected through it. I’m not afraid of pre-eclampsia anymore but I am cautious of the system we’re birthing in, especially in a time of increasing cuts and stretched resources. When we listen to stories we increase understanding and centre the lived experiences of those giving birth. That is how we create space for real change and how together we will make birth better.

 Sources

 
Rosie J⌀rgensen-Mitchell @sharedmotherhood_ivf