#DiversityInLoss – the importance of language in baby loss

One reason that I am passionate about increasing the diversity of voices in the loss conversation is because of the power of different people’s language. How we speak and how we are spoken to about the death of a baby can change perceptions and understanding of the experiences that people go through. It can also comfort, show empathy and compassion or can alienate, isolate and silence a person. It is therefore really important to listen to that language that someone is using, and respect and reflect that in your own language. Whilst this may change over time, as Hayley has explained in her love filled blog post below about her daughter Luna, it will also show the support that you are willing to give by being mindful about language. Every person explains the loss of their child differently.

Please, welcome Hayley and Luna to the Diversity in Loss series…

I can remember a conversation with my bereavement midwife, Sally, maybe a week or so after Luna died. I was recalling my previous miscarriages and telling her how Luna’s death felt completely different to me. Sally just listened, nodded. I don’t remember it, but I must have signed the piece of paper to say that I knew we were terminating Luna’s pregnancy. Don’t get me wrong, I knew we took the steps to end her pregnancy, yet the word ‘termination’ didn’t enter my vocabulary for quite some time. The language we use around death and dying is incredibly important. Vital, I’d say to the whole grieving process. The language used in the cases of baby loss is even more delicate. Sally knew this and that’s why she didn’t jump in with medical terminology, telling me ‘It feels different from your previous miscarriages, because it’s not a miscarriage. It’s a termination.’ She knew that I was too traumatised and grief stricken to hear this word. She also knew I wasn’t delusional, that I knew the difference between miscarriage and termination.

I know now, more than 2.5 years on, that my blanking of the word ‘termination’ was mainly because I felt deeply that others wouldn’t recognise or accept my grief at losing my daughter, because we decided to end her pregnancy, or ‘deliver her early’, as I was using at the time. That I must have loved her less, therefore her loss isn’t as ‘bad’ as someone else who had a stillbirth, or miscarriage; because there was a decision made, I must have decided to feel this way. As a result, grief becomes something that feels you must do very privately and shrouded in silence, or worse, that it’s not something you’re allowed to even feel. The thing is, I was crushed and heartbroken and I desperately needed Luna to be acknowledged as my daughter and for her to have a place in this world. Keeping silent wasn’t something I felt I could do and at the same time I was protective of my grief and of Luna.

It was just over the two-year mark of Luna’s birth/death that I discovered the term Termination for Medical Reasons, or TFMR. That sounds a little odd, even to me, but it just wasn’t used in my hospital or by Sally. Once I’d discovered it I wanted to start using it myself, to be clear and honest about Luna. Something interesting happened when I did. Some, those that hadn’t experienced this type of baby loss, wouldn’t use the terminology back to me. It took me about a day to realise what was going on: TFMR is a subcategory of baby loss. Like the word abortion, it has more shame and guilt attached to it than any other type of baby loss. It’s the taboo within the taboo. I had some when I told them Luna’s story and that I had a TFMR, repeat back to me minutes later in the conversation ‘So when you miscarried Luna…’ That part of my motherhood journey would get completely ignored. At best, her type of loss was glossed over, at worse, Luna would get written out of our history altogether.

Part of the problem is that people don’t understand what a TFMR normally entails, I certainly didn’t until I had one. I was induced, I laboured and delivered Luna. I was conscious. Most women in Scotland, England and Wales who have a TFMR will do it in this way. I was horrified at first to know I would be required to endure labour and the delivery of Luna, and that she may show signs of life (in the end she didn’t). However, once I understood the alternatives, I knew a labour and delivery was what was best for her, and ultimately me. I’m glad I did it in this way. It’s actually because I laboured and delivered her that it didn’t feel like a termination. To me, we were turning off her life support. We had made a compassionate decision for Luna, as her parents. Thankfully, my labour and delivery was straight forward, for many it isn’t. I was warned of what complications I could expect, especially as the medications they gave me were reduced in dose due to me having a caesarean for my son nearly three years previously. In the end, it was physically easy and I was looking forward to meeting her…it’s worth me repeating this: once labour began, I was looking forward to meeting Luna. That’s the truth. I wasn’t scared anymore, I didn’t panic, I was ready, and I knew she was ready.

Language is incredibly important and powerful. Sally knew to mirror the words I was using. We talked about delivering Luna early, not terminating her pregnancy. TFMR may medically explain what happened and the medical community use the words termination and abortion in these cases interchangeably, to explain to each other your medical history. I have proof, because I have spied my medical notes (nosey parker!) and in them are the words: 1) TOP (Termination of Pregnancy) and 2) Medical Abortion. Not ideal terms, however, they have less ability to upset me now. This is because I know what Luna’s death is to me, to us. It doesn’t matter to me what’s in my medical notes. We very much wanted Luna. We very much love Luna.

That said, it would be helpful to have a different label. I’ve come across the term ‘compassionate induction’. This term feels better, because it describes our situation exactly. This is the definition of what we did. The decision was based from love. We took our time to make our decisions, we thought a lot about what was best for Luna. What kind of life we wanted for her, however short it may be. We listened to our hearts and we heard it saying it was time to let her go. It’s not a decision we took lightly but it’s not one we regret. Do I wish it had been different? Hell yes! There is a Luna shaped hole forever in our lives. She may have only been physically with us for a short time and she was extremely tiny when born…however, her impact has been huge on our lives. Her gifts to us have been many and great and I am forever grateful that I am her mummy. 

Talking about what happened to us, telling our story, describing our situation, this is the only way I know how to break this taboo down. TFMR, or compassionate induction, happens far more often than our society realises, it shouldn’t stay this way. The grief in these desperately sad situations is valid and real. It’s not worse or better than someone who has had a stillbirth or miscarriage. The women and men who find themselves in this situation shouldn’t have to keep silent about their babies and keep their grief hidden if they don’t want to. There’s nothing to be ashamed of. We are all parenting our children and doing what we feel is best for them, whether born or still inside the womb. All baby loss is tragic and all parents deserve love and support through it.

Hayley will soon be walking three peaks, over three days, in three different countries to raise funds for Child Bereavement UK. You can read more about it and support her here.

For support in relation to antenatal diagnosis and/or termination for medical reasons, please explore the services available from ARC.