The Path to Motherhood 

After years of struggling with infertility—a journey filled with multiple complications requiring surgical and medical interventions—I was absolutely thrilled when my husband and I discovered I was pregnant in 2023. The joy was indescribable but tempered with caution. As someone with known risk factors for cardiovascular health issues, both demographic and lifestyle related, I wasn’t surprised when doctors assessed me as at high risk for preeclampsia. They promptly put me on a course of aspirin as a preventive measure. As someone generally trusting of health advice, and somewhat of a ‘rule-follower’, I accepted this diagnosis and the treatment plan. Besides, it seemed logical and aligned with what I understood about my health.

Unfortunately, that pregnancy ended in heartbreak – a devastating experience that left both emotional and physical scars.

A Second Chance and an Unexpected Diagnosis

About six months later, we were blessed to conceive again. Given my previous preeclampsia risk assessment and the toll the first pregnancy loss had taken on my overall health, I expected to be high risk for preeclampsia again. I was stunned when doctors classified me as low-risk and advised that I did not need to take aspirin. I asked them to explain how they could be so confident in this assessment when my situation seemed objectively worse than during my first pregnancy. They explained that the diagnostic tools used to assess preeclampsia were “incredibly sophisticated and accurate” and based on substantial research. The disconnect between what I intuitively felt and what I was being told was jarring. The implication was clear: trust the research, not your intuition.

The Professional Paradox

Here’s where the irony struck me deeply. In my day-to-day life, I’m immersed in public health research. I am the CEO of Mabadiliko, a non-profit focusing on community-based research that amplifies the voices of marginalised communities experiencing health inequalities, I understand the power of research. I hold a PhD in medical research (in an unrelated field) and have extensive professional experience specifically in the hypertension space, including designing and evaluating hypertension screening interventions. And yet, my immediate gut response was to reject the suggestion that any research was robust enough to counteract my personal, intuitive concerns about preeclampsia risk.

The stark reality for Black women in the UK maternal health care system is reflected in troubling statistics that align with my own experience. Black women are 3.7 times more likely to die during or after pregnancy than white women (House of Lords Library, 2023).  When it comes to preeclampsia specifically, it affects as many as one in 10 of all pregnancies, making it the most common of the serious antenatal complications. Every year in the UK about 1000 babies die because of pre-eclampsia and maternal deaths have quadrupled since 2012 (Action on Pre-eclampsia, 2024). NICE guidelines recognise “Black African or Caribbean family origin” as a risk factor (NICE Guideline NG133). These statistics aren’t just numbers – they represent women like me whose voices and intuition deserve to be heard and trusted. They shape how I approached medical care during my pregnancy i.e. with caution, hypervigilance and for the first time, a high degree of scepticism. I explained this conflict to my doctor – how strange it felt to be questioning research when my entire career is built on promoting it. The doctor kindly offered me academic references to support her position and provide reassurance.

But here’s another layer to the paradox: despite my professional background, I realised my capacity to absorb clinical research papers related to this pregnancy—a pregnancy I was terrified about—was virtually non-existent. The fear and overwhelm rendered me unable to access the very skills and resources I use daily in my work. Despite my normal need for autonomy and my professional commitment to patient advocacy, I found myself in a position where I felt I needed to rely on an expert. I simply didn’t have the emotional capacity to interrogate the situation as I normally would. I asked whether it would be appropriate for me to take aspirin anyway, as a precaution. Again, I was advised that because I was deemed low risk, they would not prescribe it. The ‘rule-follower’ kicked in again and avoided the temptation to take my own aspirin anyway.

When the Other Shoe Dropped

The pregnancy itself proceeded without apparent issues and I delivered my gorgeous little girl without complications. I must also say that overall I felt I received very good antenatal care, I’m grateful to the midwives, doctors and administrative staff that allowed me to meet my baby.

But about five days after her birth, I was diagnosed with preeclampsia.

What followed was a nightmare. I spent most of the first month of my daughter’s life in and out of hospital, staying for days or nights at a time while doctors tried to get my blood pressure under control. I couldn’t be at home with my newborn daughter. My wonderful husband had to care for her in those scary early days alone, though thankfully we have an amazing support network. Sometimes my baby would spend time with me in the hospital, with my husband and mother present, while I received treatment. Some doctors explained that I also know that it’s possible that I developed postpartum preeclampsia—a condition that emerges after birth rather than during pregnancy. However a couple of doctors suggested that based on my medical notes, it was likely that preeclampsia was missed during my pregnancy. The truth is, I will never know.

The Aftermath and Reflection

Thankfully, we came through without long-term complications for either myself or my daughter. But the emotional impact remains profound. I feel angry at the potential risk that both myself and my baby would have been exposed to if indeed I did have preeclampsia during pregnancy and developed symptoms before her birth. More than anything, I was angry at myself that by relying on their ‘research’ and ignoring my intuition I put us in danger. I may have missed out on treatment that might have prevented the separation from my daughter and the trauma of those early weeks of motherhood. The separation from my daughter during those precious first weeks is time I can never get back.

After my diagnosis, because of my professional relationships, I was thankfully able to make urgent calls to senior colleagues at King’s College London who have become firm friends. Even in my personal life, I have many friends who are doctors and/ or deep in antenatal medicine literature, and my best friend’s husband is a global leader in women’s health. This army of people provided reassurance about the treatment plans recommended by my doctors. But I can’t help thinking: what if I didn’t have access to those resources? I would have found myself in an incredibly frightening situation, which would have only compounded the anger. I now carry trauma about that early experience of motherhood, which was unfortunately compounded by other issues—falling through the cracks with community midwifery and my daughter also becoming ill as a result.

The Deeper Question

This experience brings to life the work I do and highlights the very real risks we can face within healthcare systems. As a Black woman it leads to the inevitable question: Is this connected to my race? Was I overlooked due to negligent or discriminatory practices? I don’t have any explicit evidence to say that was the case. But the experience triggered a racialised trauma in me—another compounding factor during an already vulnerable time of antenatal life and early motherhood.

It also highlights for me in a very personal way how this experience affected my perception of my care and the research it was based on. It raises important questions about how different forms of knowledge are valued in healthcare decisions. My story exemplifies why lived experience must be central to health research and service delivery. When research is conducted “into us, by others,” it may miss crucial insights that could transform healthcare outcomes but also affect marginalised communities’ motivation to rely on it. This truth prompted me to write an article series which describes my thinking about this, as well sharing thoughts from others.  By positioning communities as co-creators rather than subjects, we can expose critical gaps in clinical algorithms, bridge the divide between professional knowledge and personal reality, and reveal invisible barriers that statistical data cannot capture. This approach recognises lived experience as a form of expertise and integrates community wisdom with academic rigour—creating research that is both scientifically sound and culturally relevant. The result is more effective interventions and lasting improvements in health outcomes for those experiencing the greatest inequalities.

The Voluntary and Community Sector can play a vital role in facilitating this transformation, serving as a trusted bridge between healthcare institutions and communities. With their long-term community presence and established relationships, VCS organisations can elevate diverse voices, gather these critical stories, and create sustainable networks connecting multiple stakeholders. Moving forward requires us to go beyond tokenistic consultation toward genuine co-creation—a process where communities meaningfully influence research priorities, methodologies, and interpretation from the very beginning. Crucially, this approach creates spaces where individual intuition and personal experience are valued rather than dismissed, and where each person’s insights contribute to our collective understanding of health and wellbeing.

Because sometimes, your gut knows what the research might miss.