“There’s your baby’s heartbeat,” said the sonographer, pointing to the screen as we listened to the thump-thump-thump that was the most magical sound I had ever heard. A week later, the next scan showed that this beautiful twinkling heartbeat had gone, and our baby had died. I couldn’t face having to wait to pass the pregnancy sac, so I opted for surgery: a procedure called an ERPC: “evacuation of retained products of conception”.
I remember thinking that “evacuation” sounded like something you’d have done to your bowels. “Products of conception” might be the correct clinical term, but to us, as a grieving couple, that was our dead baby: our much longed-for baby, who was already loved and anticipated as a unique human being, not simply an object to be discarded.
From the outset of your antenatal care, the NHS refers to “your baby”, acknowledging that the stage of gestation doesn’t determine the meaning of the pregnancy to the family. But as soon as the pregnancy is “non-viable”, there’s an immediate and stark switch in the language used. Bethan Raymond lost her daughter Bella at 16 weeks. “I was told over the phone that my – still very much alive – baby girl had a fatal chromosomal abnormality, and would therefore die,” she told me. “I’d barely had time to process this when I was asked how I wanted to dispose of the products of conception.”
By law, babies born after 24 weeks must be buried or cremated: but for pregnancies lost before this stage, no such legal obligation exists. If you happen to miscarry at a hospital that doesn’t consistently implement a sensitive disposal policy, these “products of conception” may be incinerated along with clinical waste. By contrast, in Japan all losses have the same distinct status, regardless of gestation. Embryos, foetuses, stillbirths and neonatal losses all share the name mizuko, or “water child” – honoured and mourned through mizuko kuyō memorial services in Buddhist temples nationwide.
We’re starting to learn from this here: bereaved families will light candles on Monday 15 October, the culmination of Baby Loss Awareness Week, to commemorate the lives of babies who have died whether during pregnancy or after birth.
Our language of pregnancy loss is so wedded to the notion of failure, unintentionally attributing blame: “failed pregnancy”, “incompetent cervix”. To a grieving mother, desperate for answers and quick to blame herself, even the term “miscarriage” suggests her own inability to carry, as though she has somehow neglected her baby. Joanne Smith was told at her 12-week scan that there was an empty sac and no sign of a heartbeat. This is known as a “blighted ovum” – literally meaning “rotten egg”. “What does a blighted ovum even mean?” she asks. “Isn’t blight something to do with diseased potatoes?”
Language matters. A recent study found that four in 10 women experienced symptoms of post-traumatic stress disorder after a miscarriage. Other studies show the depression and anxiety experienced by many women after a miscarriage can continue for years.
“There is a fundamental discordance between the words that we use as clinicians to transmit information efficiently, and the emotional impact of that language on patients,” obstetrician Dr Larisa Corda observes. “Part of improving the care we deliver involves us improving our vocabulary.”
There is never going to be a single vocabulary that’s universally “right”, as people may respond differently to different words – but just listening can go a long way. Just listen to us and the words we use. Take your cue from how we talk about our loss, and reflect our language.
There is no reason that the language around pregnancy loss can’t continue to evolve – terms such as “spontaneous abortion” or “habitual aborters” are, thankfully, no longer used routinely in the UK. The Miscarriage Association has worked with the Royal College of Obstetricians and Gynaecologists to improve its patient information leaflets, which now refer to “surgical management of a miscarriage” and “pregnancy remains” instead of “ERPC” and “products of conception”.
I’m really hopeful that we will find more appropriate vocabulary, as well as providing better emotional support for couples after they suffer a miscarriage. But this can only happen if we all start talking about pregnancy loss more openly. One in four pregnancies end in miscarriage , but millions of parents suffer this grief in silence. Only if we collectively have more frank and honest conversations about this issue can we possibly hope to formulate a new language that respects and validates loss.
• Katy Lindemann is author of a forthcoming book that shares real women’s stories about the emotional experience of infertility and pregnancy loss
• This article was amended on 12 October 2018 to acknowledge the fact that the culmination of Baby Loss Awareness Week comes on Monday 15 October
