Baby Loss: A Taboo Subject



This week is Baby Loss Awareness Week. Baby and pregnancy loss touches so many of us. That terrible statistic, that 1 in 4 pregnancies end in miscarriage, means that most of us will have gone through it ourselves or have someone close to us who has. In fact, I am always astonished at how many stories we carry between us when it comes to pregnancy; stories of heartbreak, loss and devastation, but also hope and resilience, of trying again (and often again and again), in pursuit of our happy endings.

Before writing this, I asked some of my closest friends if they’d mind sharing their stories of pregnancy loss. The stories poured out; still raw, full of visceral emotion that has been put to one side but never forgotten. What struck me was the commonalities between our tales. Being made to feel like we were being silly for being upset (after all, it’s 1 in 4 pregnancies, it’s part and parcel of parenthood, right?!). Not receiving enough information. Receiving too much of the wrong information. Being made to feel like a lab experiment. Of simply not being prepared. And not knowing where to turn. When 1 in 4 pregnancies end in miscarriage, it’s easy to see why healthcare professionals might become immune to the pain. In fact, I imagine it’s a survival trick for many. But the quality of care we receive in the days and weeks after a miscarriage can set the tone for how easily we recover. I often wonder why miscarriage is such a taboo subject, and I think part of the answer lies with the way we are treated when we experience loss. A matter-of-fact doctor who reminds you how common this is can quickly make you feel like you are making a fuss over nothing. So, we don’t talk about it openly. We keep our secrets to ourselves, because this is commonplace, isn’t it? It’s to be expected. We’re stupid for getting so upset really. And so, the cycle of grief and silence and more grief begins.

My first experience of pregnancy loss came, perhaps most devastatingly, after a round of IVF. I’d waited two years for a positive pregnancy test, and to finally get one, and then start bleeding later that day was a particularly cruel twist of fate. The IVF clinic had given pretty clear instructions on what to do in this situation so I duly phoned the number provided. I was told to come in for a blood test the next morning. Very matter of fact. The person at the end of the phone made me feel like an idiot for even having to ring them. When they later called to inform me that ‘the results are inconclusive. You might still be pregnant. You might not. It’s a case of waiting and seeing’ it felt like a body blow. I still can’t quite believe this was all dealt with via the phone to be honest. When 4 more days of bleeding and a final, very clearly negative, pregnancy test followed I phoned them yet again. I was offered a follow up appointment for two months later and that was it. My non-pregnancy was over before it begun. I had no one to talk to and had been made to feel so insignificant, part of a routine process, that I didn’t feel I could make an appointment to see my GP and talk about how I felt. We’re British For God’s Sake. That’s not what we do.

And so, I did what many of us do in these situations. We minimise. We tell ourselves it could be worse. We read stories of women who’ve gone through much more awful experiences and tell ourselves off for being upset. We pull ourselves up by our bootstraps and carry on. And quietly, a little bit of us dies. We become less hopeful, less optimistic, more guarded. More battle weary.

As these stories often go, I fell pregnant (naturally – after 3 failed fertility treatments!) not long after that loss. My gorgeous baby arrived and with her I forgot about all that had gone before.

Eventually my husband and I recovered from the shock of having a baby (they are wonderful little things but man do they turn your life upside down). We decided we’d quite like another. To our astonishment, I got pregnant pretty quickly. At the 12-week scan however it quickly became apparent something was very wrong. The scan was being carried out by a student, and when the consultant swiftly took over I knew we were in for bad news. They told me it was a molar pregnancy. A rare phenomenon that warranted them bringing other staff into the room to take a look because they’d only seen it in textbooks before. I value the importance of education, I really do, but waiting for what felt like more and more people to come take a look at my medical oddity does not afford you much dignity in what is a very traumatic situation. After they had all viewed the scan, my husband and I were ushered to another waiting room to discuss options to have the pregnancy terminated (even now, I am not sure whether I should call it a pregnancy. A molar pregnancy happens when a fertilised egg turns into a growth rather than an embryo. So, was I even experiencing the loss of a pregnancy? These are the awful questions you ask yourself at a time like this). Thankfully a nurse noticed my distress after what felt like an eternity of sympathetic but curious glances and moved us into a private room.

The staff I dealt with this time were all very kind. What I was going through was shit and they all acknowledged that. There can be no easy way to have to talk a women through a D&C while she is clearly in distress and I hope everyone who has that job knows the difference all their small acts of kindness make. I, being ridiculously British at all times, made a few terrible jokes through my tears to prove that I was really ok despite the tragedy of it all and the nurse had the good grace to laugh rather than tell me I was being a twat. Thank you for that.

What I was not prepared for, however, was the lack of knowledge about what I was going through. If you experience a molar pregnancy, there is a chance the D&C won’t get rid of it all, so you need fortnightly blood tests to check whether you’ll need a course of chemotherapy for at least six months after the operation. This was first explained to me while I was still lying on my back with my stomach covered in gel during the scan. I had only heard the words molar pregnancy for the first time 5 minutes before and now I was being told I might need chemotherapy: that’s an awful lot to go through in just five minutes. It can really mess with your head.

To make matters worse, I then had to call my doctors and tell them I need blood tests. Turns out, GP surgeries do not like giving you blood tests unless they have personally sanctioned them. So, I had to go in, with my letter from Charing Cross hospital, and educate pretty much every single person there about what a molar pregnancy was. Eventually they took pity on me and booked me an appointment with the nurse. When I turned up for the appointment, we went through the whole rigmarole again. I was beginning to feel like the Wikipedia page for Molar Pregnancies. Then it turned out the letter from the hospital didn’t say what tube the blood should be collected in. The nurse couldn’t do the blood test without knowing. I couldn’t face having to try and go through reception to book another blooming blood test. I pretty much threatened to take the blood myself if she didn’t help me. Do not challenge an emotionally unstable woman who has recently been through hell. You have no idea what lengths she will go to.

Eventually, we found a phone number on the (frankly pretty rubbish) information I’d been sent by the hospital. The lovely nurse took my blood, booked in my next appointment with her for a fortnight’s time, and saved me ever having to deal with the GP receptionists again – for which I thank God on a regular basis.

But it hurt. It hurt that I had gone through this terrible experience and rather than being looked after I was having to fight. Fight to even get an appointment for a blood test. Fight to find out the information that, let’s face it, every nurse must need in order to take blood so probably should have just been included in the letter they sent me. I felt completely alone, because my aftercare was all down to me. I never went to Charing Cross hospital, they just sent me a box in the post every fortnight with a testing kit in it, and eventually, after six months of fortnightly tests, I was allowed to reduce the test to once a month until eventually I was given the all clear.

Pretty much nine months after that my son was born. Both my babies have been born out of immense heartache and are a beautiful footnote to the tears, heartache and despair that went before. My story has a happy ending, but so much of what I went through, and my friends went through, and countless other women will go through, could have been helped with a little more thought on behalf of the people looking after us. Yes, 1 in 4 pregnancies will end in miscarriage. Yes, it is (sadly) a normal part of pregnancy. But each miscarriage represents the death of someone’s hopes and dreams. The closing of a door, even if it is only a temporary closure.

This year, Baby Loss Awareness Week is calling for improved bereavement support for families experiencing pregnancy and baby loss. They believe that everyone should have the chance to have the support they need, when they need it, for as long as they need it. And that is exactly what any couple experiencing pregnancy or baby loss needs to hear. That it is ok to feel grief. That they deserve support. And that there is support available for them, whenever they need it. As a much wiser person than me once said, it’s ok not to be ok.

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