‘Every little twinge sends me into a panic’

Finally. Those two pink lines on a test. Feeling utter amazement and disbelief that nature worked as intended. I take another test and begin examining the level of its darkness against the first one. I’m satisfied, for the moment at least, that I’m still pregnant. I tell myself to leave it now and test again tomorrow. My husband, upon seeing the first test, was straight away convinced everything was going to be fine. I on the other hand…

I caved. I tested again that evening. There was still a line. I could feel the level of obsession rising, the compulsion to test every half an hour was just too great. I hadn’t even been pregnant a day and was already spiralling into test addiction but what I really needed, was to know the pregnancy was going to make it. Who could I ask? Who could I turn to? I am already head-first into the 12-week-keep-it-a-secret-until-the-scan abyss. I downloaded a pregnancy app, to give me the positive reassurance I so desperately needed. It told me what symptoms I could expect over the coming days and what is going on inside me. Every little twinge sends me into a panic. Every moment without a twinge sends me into a panic. This is going to be a long twelve weeks, let alone nine months.

At the twelve-week stage, miscarriage is believed to decrease significantly and many people wait until this stage to announce the pregnancy. Photo by Julia Victor

With my first pregnancy, the result of which is now a happy, Hot Wheels-mad four-year old, I did over twenty tests – those known as “internet cheapies”. These are readily available online and come in batches of 10, 15, even 50, for a fraction of the price of branded tests. With these, I can compare lines over time and see them getting darker and darker, which must surely mean everything is going as it should be…right? Heck, I could even compare them online with pictures sent in by others experiencing this crazed, early pregnancy madness. Then, perhaps, I won’t be so alone.

I really ought to ring the doctor and get booked in with a midwife for my eight-week booking appointment. I am only six weeks gone. I keep asking myself, “Is everything okay in there?”. I am already exhausted, and I know my mental health is going to take a hit with all this worrying. But really, what else is there to do? I just need to know, to see, there’s a little heartbeat raging in there and I can relax. I just need a blood test to confirm my levels of HCG (the pregnancy hormone) are rising, then I can relax. But these things don’t come easily and expectant mothers are essentially left to it until something goes wrong.

I ring the number for the midwives and hope I can speak to someone and perhaps arrange an early reassurance scan, like I had with my first child. However, I am met with a “leave a message after the tone”, and can only wait for someone to get back to me. It makes me realise how utterly lonely and terrifying these first weeks of pregnancy can be. And why, so many of us, turn to finding our own remedies – Google and internet cheapies.

I still couldn’t shift the feeling that something wasn’t right and sure enough, just as we were settling down for the evening, my deep-rooted suspicions were confirmed. I began to experience light bleeding, also known on the pregnancy forums as “spotting”. My husband reminded me that I’d had this the first time round and everything went on to be okay. I just stared blankly into his eyes; I knew it wasn’t going to end well this time.

The next morning, the bleeding became heavier and I resigned myself to the fact that it was game over. Strangely, this is when the panic set in. Like being told a hurricane was on its way and needing to make preparations, I sat around wondering, is this what a miscarriage is like?

Information about early pregnancy can often be very generic, leaving expectant parents using online forums for answers. Photo by Charles Deluvio

Turning again, to my old friends Google and the pregnancy forums, I found out that one in four pregnancies end in miscarriage – a staggering 25%. Early miscarriages, such as mine, can often be attributed to “chromosomal abnormalities” with the developing foetus. In other words, it wasn’t my fault and wasn’t preventable. But what if it was? How could I find this out? What if it happens again?

My most overwhelming feeling was not only of loss but also of frustration – of having no answers and not knowing what went wrong. All the research was telling me there was nothing I could do, but no one knew my body. What if there was something more going on with me? It had taken a long time to get pregnant this time round and I was told by a doctor a few months previously, that they wouldn’t investigate until it had been longer than two years of trying. Two years! And now I’ve just “failed” on what might be my last chance. The lack of answers is now becoming my next obsession.

I continue my research and find Tommy’s, the UK’s largest charity researching the causes and prevention of pregnancy complications, miscarriage, stillbirth, premature birth and neonatal death. Their current campaign, ‘Tell Me Why’, focuses on the causes of miscarriage and providing answers for those of us that have suffered baby loss.

The campaign is calling for investigation after every miscarriage instead of women having to wait until they have experienced “three in row” and receive better access to support services. The campaign petition has received over 200,000 signatures to date.

Lindsey Frodsham, media and PR manager from the charity, explains that most parents don’t get a “reason” for their loss and many people don’t have those answers because “they can’t access the tests in the first place”.

Waiting for fertility investigations or for answers following a miscarriage can be a lonely time for expectant parents. Photo by Boram Kim

Yes, this was me. And countless others. Finally I wasn’t so alone. I wondered whether the doctors would even be interested. I was only around six weeks pregnant; would it even be worth giving them a ring? My doctor listened intently and referred me to the Early Pregnancy Unit (EPU) at Bristol’s St Michael’s Hospital. She suggested a scan would be useful as, “sometimes it’s not always bad news and we should check things are okay in general”, particularly when spotting occurs during early pregnancy. The last time I was there at St. Michael’s, I walked out with a healthy baby boy. Today, I could potentially be walking out with nothing but pain.

Arriving at the stark, empty hospital I made my way to the EPU. I am asked to take another pregnancy test – another to add to my pile. A heavily pregnant woman and her partner held hands and stared nervously into each other’s eyes. I am reminded of how utterly soul-destroying the wait in the EPU can be – we are all here because something is wrong with our babies; at the complete mercy of tests and scans, the outcomes of which are frustratingly out of our control.

I am called into the darkened room and the doctor tells me somewhat awkwardly that as the result of the hospital pregnancy test was negative, I wouldn’t be offered a scan. The doctor’s actual words were, “there’s nothing in there, so we won’t see anything on the scan”. The doctor’s pragmatism killed me. I knew there wasn’t either, but I needed the reassurance that things were as they should be – like my GP had wondered, and given I had just miscarried, wouldn’t it be wise? Would it have been such an inconvenience to offer me a reassurance scan? Had it been a busy day in the department, I would’ve understood. The fact it was empty just added to my frustrations. I left the hospital knowing nothing more about what had happened to me or my lost baby, than I did when I entered.

University Hospitals Bristol and Weston NHS Foundation Trust was asked to comment for this opinion piece. They said that they recognise how difficult it is to receive a negative test result, but also that they also have clinical staff trained specifically to provide support in situations, such as miscarriage. Patients can discuss their experiences with the Patient Support Team, they added.

Retail tests provide a high level of accuracy but don’t measure actual HCG pregnancy hormone levels, making it difficult to know exactly how the pregnancy is progressing. Photo by Julia Victor

Later, I discovered The Willow Tree Centre, in Chargrove, Yate, Bristol, another charity supporting women with baby loss. I discussed with Mary Makepeace, director of the charity, about my recent experience. I found that the charity offered support on a one-one basis with a trained “baby loss practitioner”, either by telephone or in-person, to talk through the emotions and trauma of the experience. Support is also offered to partners too. I wished I had found them earlier, particularly after my somewhat unhelpful hospital experience.

Mary explained that she felt there was a need “for more support following any type of miscarriage loss” and that it “still appears to be a taboo subject”. She believes that women suffering baby loss make the best recovery when they are treated with empathy, given enough information about what is happening to their body and when the enormity of loss is recognised fully.

Those words resonated with me. The “holy trinity” of miscarriage care. I will never have an answer for why the loss happened and I will never know how different I could’ve felt, had I been treated with more care and better still, interest. The speed at which it all happened and having so little control has left me somewhat haunted. Perhaps, I need to recognise more fully the trauma I experienced. Do I even want to try again? Can I cope with those two pink lines again? Will loss happen again? I honestly don’t know.

Main photo by John Looy

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