When I was pregnant with Lenny, I remember the concern I had about reaching the magical 12 week mark where the risks of miscarriage decrease hugely. I felt nervous approaching my 20 week scan as sadly I do know people who have had later second trimester losses so I knew we weren’t yet out of the woods. However, entering the third trimester I began to grow in confidence and even more so as I had a scan at 38 weeks to check Lenny’s positioning and everything looked perfect – I finally felt fully relaxed. At the back of my mind, I knew that later losses could happen but I assumed this was the case when pregnancies went over 41 weeks or when there were maternal or foetal health risks. Put simply, I’m not sure I was fully aware that full-term babies could die in the womb or during labour after a perfectly healthy pregnancy.
I feel so ignorant saying this now but I didn’t realise that healthy babies could just die. According to SANDS, 1 in 240 babies is stillborn and half of these occur late in pregnancy after 34 weeks. I didn’t know this and I work in research and meticulously researched every aspect of my decision-making in pregnancy – I’m not talking about google or netmums – I am actually the kind of serious nerd who read a systematic review to decide whether or not I would accept a sweep (I know poor Roy!) Why was I, a self-confessed mega nerd so ignorant? Because we just don’t speak to pregnant women about this.
I was already aware of SANDS, I am not sure how or why because they comment that most people only find out about them once they or someone they love experiences baby loss. Again reinforcing my point about a lack of awareness. But even then – I thought if anything could go wrong it would be detected on a 38 week scan – surely only poorly babies die? This isn’t the case. Often post-mortem results reveal perfectly healthy babies, often there is no known cause of death, or it is due to issues with the umbilical cord or the placenta. The silence around baby death does nothing to stop babies dying. It compounds the stigma and isolation felt by those who experience this tragedy – indeed my GP said of Lenny’s death, “this just doesn’t happen in the Western world,” so even medical professionals appear ignorant to the realities.
Some might argue that so far as pregnant women are concerned ignorance is bliss and we ought to protect them. I would suggest this silence does the opposite of protecting pregnant women – the very people who stand to be most affected by a baby dying shortly before, during or after labour. It fails them. The silence means there is little awareness and a scarcity of funding for research which could help prevent these deaths. It also means for the unfortunate 1/240 pregnant women who do experience this kind of tragedy – they will likely find themselves educating people around them whilst in the throes of grief. Wouldn’t we be supporting pregnant women more by ensuring that as a society we were all better educated, rather than pretending this doesn’t happen.
Increasingly, there are drives to raise awareness among pregnant women to report reduced foetal movements. In my experience though no one really made this seem serious or urgent in any way and I all the health professionals I asked were vague as to what this meant. Reduced foetal movement can be an indicator of a baby who is struggling – this wasn’t the case for Lenny he was a consistent wriggler. Knowing about late losses would have done nothing to save Lenny – he died due to a freak cord accident at the end of labour something which could not have been predicted or prevented. I am also not suggesting that I would have felt at all comforted by this knowledge after Lenny died – but perhaps may have felt like we weren’t the only ones in the world this had happened to.
The lack of awareness means there is limited funding for research. According to Professor Alex Heazell, himself a bereaved father and who heads up the Tommy’s research centre and Rainbow clinic in Manchester states there are only around 3000 published papers on stillbirth globally. As someone who works on systematic reviews I can say this is a shockingly tiny number! Like mind-blowingly small. Obstetrics is without a doubt a Cinderella area of medical research. Professor Heazell is leading research into the role of the placenta for babies who die in the womb – the placenta is an organ we know surprisingly little about comparative to other organs in the body.
It isn’t just funding that hinders research in this area. There is no consistency in reporting of stillbirths globally, meaning there is poor quality data to even begin to understand the incidence of and potential risk factors for babies who die in the womb. Often paperwork is completed before the post-mortem results are received and so the cause of death can be incomplete or inaccurate. Put simply – we don’t have an accurate picture of the numbers of babies who die in the womb, why this happens and how to prevent it. If similar numbers of 3 year-olds were dying without any clear cause there would be a public outcry and calls for urgent research. This is why so many bereaved parents do some form of activism to improve this situation.
I refer to ‘babies dying’ or ‘babies dying in the womb,’ because Lenny died just as he entered the world and I don’t believe that ‘stillbirth’ or ‘intrapartum stillbirth’ is an accurate portrayal. I think about Lenny’s death as my new (much much better) GP described – Lenny was born and then Lenny died. I am not sure what other loss parents would think but I feel that ‘stillbirth,’ is an outdated phrase and possibly part of the problem. It is a sanitised phrase because ‘born still’ is more palatable than ‘born dead.’ Maybe it’s the Yorkshire lass in me – but who are we protecting here? Not the parents, the worst has happened to them and if anything this phrase belittles and invalidates their experience. It also sounds like something which is from the past and like my old GP said ‘just doesn’t happen in the Western world,’ so we can forget about it. I also didn’t lose Lenny, I lose my keys (far far too often because I’m like my dad) but I wouldn’t lose my baby. He died. As far as language is concerned it is probably a personal choice and we should take cues from those who have experienced it to describe their situation their way – I am no expert on this topic – this is just my opinion.