CHAPTERS on The Hidden Toll of Baby Loss

Ectopic Pregnancy Awareness Day - 1st August

Today is Ectopic Pregnancy Awareness Day, so we take a break from our usual service to talk about a subject close to my heart and have a moment for the women and families who are, or have been, affected by baby loss.

You are not alone 🩵

When I fell pregnant, we were absolutely overjoyed and booked an appointment at the hospital straight away. We couldn’t wait to talk about every step of the journey. But while we were there, I started to get back pains, profusely sweating, and bleeding. We were rushed for an ultrasound. My pregnancy was ectopic. That scan saved my life.

An ectopic pregnancy occurs when a fertilised egg implants itself outside of the womb, usually in one of the fallopian tubes. This poses a risk to the mother’s life, and tragically, this type of pregnancy cannot be successfully carried to term and will not result in the birth of a live baby. Sadly, there are on average three deaths per year in the UK and Ireland from ectopic pregnancy.

Our baby had implanted into my fallopian tube and was growing rapidly. I would need emergency surgery to remove it. This devastating news was delivered in a clinical, detached way, without any recognition of the profound loss involved: the loss of a baby, a dream, a future, and potentially a fallopian tube.

The failure to properly acknowledge the impact of pregnancy loss is ingrained in our healthcare system, where such losses are not formally recorded. As a result, NHS trusts have no idea how much resource is needed for women experiencing this kind of complication. The Ectopic Pregnancy Trust is running a campaign to raise awareness of this pregnancy complication and highlight that whilst “over 12,000 people have ectopic pregnancies diagnosed each year, the true number could be over 30,000.”

It has been hard to find the words to write this piece. Of course, it feels like a personal and raw story to share. However, there was something bigger than that blocking me, quietening my voice. And the more I’ve spoken to others about pregnancy complications, the more obvious it’s become that this is another issue on which women are systemically silenced and oppressed.

Looking back on the days I was in the hospital, I was treated as any other surgery patient and the focus was on my physical recovery. I was nonchalantly told I’d now have a higher risk of further ectopic pregnancies and to “give it a month” before trying again. I was told there was no reason for my ectopic pregnancy besides ‘bad luck’. We were packed off with a generic information booklet and some photographs of my sewn-up internal organs. For several days I could barely walk.

I find it incredibly difficult to believe that a health-related issue affecting 1 in 80 women comes down to luckiness. Is that not something we reserve for wins on the lottery or Friday 13th?

There was no follow-up or aftercare, no offer of mental health support or guidance to navigate our way through this unknown landscape. At this stage, I was just grateful to be okay, to be alive. In some ways, the worst was yet to come. I was so unprepared for the reality of baby loss because no one had educated me on it and we completely underestimated the longer-term traumatic toll it would take.

Women, particularly, are trained from childhood not to ‘make a fuss’ and this extends to our very biology. No one wants to talk about our periods, pregnancies, abortions, miscarriages, and traumatic birth stories. Unless, of course, it’s a political debate on how to legally restrict and control women’s bodies, freedoms, and choices in these areas.

Women’s health symptoms are dismissed or deemed “normal”, not taken seriously or simply not understood by medical practitioners who aren’t being sufficiently trained in this field. Therefore, conditions like endometriosis go significantly under-diagnosed in the UK, with the average time to receive a diagnosis now taking about 8 years and 10 months. READ THAT AGAIN. That wait has become a year longer since the pandemic.

Worse still, nearly half of these women had visited their GP more than ten times with symptoms before receiving a diagnosis. Additionally, many had to visit A&E multiple times, often without being referred to a specialist. Thus, many women experience worsening symptoms and a higher risk of permanent damage before they can access appropriate treatment.

A staggering 49% of maternity services in the UK are rated as "requires improvement" or "inadequate" overall. Specifically, when it comes to safety, an even higher percentage—65%—of maternity services fall into these categories.

We are being failed by our systems and the taboo around these topics is a powerful way of stunting these conversations, of cheating women out of properly resourced services, short-changing us with a lack of support in workplaces, brushing us off with gaps in medical research, medical mismanagement, dismissing us as making a fuss about nothing.

It seems to me that the world treats pregnancy complications as a remote possibility when the reality is that 1 in 3 women will go through a baby loss. (Given these figures aren’t being properly recorded, it is probably safe to assume its even more). Further to this, the Ectopic Pregnancy Trust campaign emphasises that, “following an ectopic pregnancy, one in three women might experience distressing symptoms of post-traumatic stress, anxiety, or depression.”

So, where are they all? And why do we feel so alone?

Join the dots and you will start to see a continuum of gender inequality playing out. From the gendered language around children to the wolf whistles and catcalls when we’re teenagers to the sexist jokes, maternity discrimination, workplace sexual harassment, the gender pay gap, to rape, domestic abuse, female genital mutilation, and so much more in between. All topics on which women are societally and systemically made to feel ashamed, silenced, or somehow to blame. Talking openly about baby loss feels equally taboo.

When you feel isolated, it’s easy to start believing you might be being over-sensitive, maybe you have done something wrong, been unlucky, or that this is ‘just the way things are.’ It makes it very difficult to join the dots and to see yourself as part of a bigger system. A bigger system with big problems.

For me, the feelings of isolation and loneliness have been worsened by a lack of understanding and absence of compassion from some of the people I’ve told—medical professionals, colleagues, and friends. The topic feels off limits, no one knows what to say, or no one says anything at all. When it could be as simple as a kind, and knowing, ‘how are you doing?’, a listening ear, an arm around the shoulders.

Rather, there is a huge pressure on us to keep going, to get on with life, to move on. So, you drag this heavy weight through the days with you and put your brave face on. The face that’s now met its own mortality. Meanwhile, this experience seeps into every aspect of your life and frankly it’s exhausting.

For me, there’s the outward daily reminder of the scars I now hide on my body. To the inward battles with a more anxious, pessimistic outlook, constantly preparing for the worst-case scenario, dampening down any feelings of optimism to protect and prepare for disappointment. A symptom detective catastrophising every ache or pain, over-analysing and awaiting the next disaster.

Not to mention the strain it puts on relationships so cruelly stripped of innocence and hope. Everyone experiences loss and grief in different ways, and it’s hard to know how to move forward and rebuild your life together now it looks unrecognisable. It takes you further apart and brings you closer together than you ever imagined possible, sometimes all at once. The pain takes a different toll on men. Some may feel disenfranchised, afraid that talking about their grief might be seen as emasculating. Others ill-equipped without the language or tools to express their own experience of the loss. Many are under pressure to take on the expected gendered role of ‘the strong one’ perhaps without any support system of their own.

None of this seems to be acknowledged or taken seriously by our politicians, education, healthcare, and mental health services. In fact, things seem to have got worse. Since 2019, the maternal mortality rate in the UK has gone up from 8.79 per 100,000 to 13.41. Post-covid, there have been reduced contraception and sexual health services and long waiting times which impact women’s ability to manage their reproductive health. Across the spectrum, we are being left unsupported and invalidated by the healthcare system and are left feeling frustrated and helpless.

It is time to own our stories, to join the dots, and to speak out. I hope that sharing this small window into my experience makes someone out there feel less alone or more empowered to advocate for themselves. Or helps someone feel better prepared to support a loved one going through a loss.

Whether you have been affected by ectopic pregnancy or another form of loss, or you know someone who has, talking about these difficult subjects can save lives. Please do share this with others or get in touch. I’d love to know of more ways that we can join forces and affect change.

I’ve found useful resources not only for mothers, but partners, family and friends too on the Tommy’s charity website and the Ectopic Pregnancy Trust website is a helpful forum too - link here.

And for parents who have experienced the devastation of losing a baby, you can apply for a baby-loss certificate to have your grief recognised - read more here. We put our baby’s name on ours and I was pleasantly surprised by how much that piece of A4 paper meant to me when it arrived in the post.

I plan to write more about my journey here as and when the time feels right.

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