TFMR – termination for medical reasons – and a baby loss never talked about

In the UK, conversation surrounding TFMR (termination for medical reasons) baby loss is still incredibly limited.

Today, we’re re-sharing this brave and deeply personal story, hopeful that it may help anyone navigating TFMR, and challenge the silence. In February 2020, the amazing creator behind Little Norfolk Cottage – Zara – walked us through her experience, the impact TFMR has had on her and why raising a voice to this taboo is crucial.

Over to Zara.

I bet near enough everyone who is about to undergo IVF treatment has googled something like, “What are the chances of IVF working?”

However hopeful we are, we are all aware that not every cycle is successful.

We are also all aware that cycles, and all pregnancies, can possibly end in miscarriage. This information is always readily available for us to hear and read about.

But what we don’t hear about – or at least I hadn’t – is that all cycles and pregnancies (IVF or not) can also end in a termination for medical reasons – often referred to as TFMR.

No one’s talking about TFMR

I thought maybe that was just my ignorance, that TFMR was something that is acknowledged and spoken about, but it was just that I had never really heard of it, because I presumed it was so uncommon.

How wrong I was. After losing our son Jesse in October 2018, I searched everywhere for a mention of this harrowing way of losing a baby.

What did I find out? Very little. You see, TFMR is barely spoken about.

The latest TFMR stats

Very rarely will you see TFMR being written about – it’s not often included in any studies or research.

Yet it happens to almost 14 babies every day. Every single day. That makes TFMR almost twice as common as stillbirth, yet it is barely ever acknowledged.

In 2018, according to Tommy’s statistics, 2,943 babies were lost after being stillborn. According to the Department of Health & Social Care (DHSC), there were 3,269 TFMR during that same time period. The actual number is likely higher, as procedures that take place in an abortion clinic as opposed to a hospital are often recorded as abortions, rather than TFMR.

With those figures in mind, that’s over 5,000 TFMR every single year.

Coping with TFMR

Would I have found it any easier to cope with, if I’d heard or read about TFMR before I went through it? Yes, I think I would have.

A little bit of my heart broke the day we said goodbye to Jesse – and that will never heal. But I would have felt I wasn’t alone, and that I wasn’t the only one that this had ever happened to.

Losing my baby to TFMR was so isolating and frightening – almost shameful, even.

Thankfully, I found ARC (Antenatal Results & Choices) and Flora Saxby from Petals Charity, which offers counselling to couples dealing with baby loss.

Both organisations held my hand throughout the entire ordeal and, somehow – with additional help from my family, friends and our three-year-old son, Jax – I came out the other side.

Our experience of TFMR

Being told your baby is very, very unwell is every parent’s worst nightmare. Then, having to make a decision to end the pregnancy – and your baby’s life – really is beyond what any parent should ever have to do.

We were told Jesse was simply ‘incompatible with life’ – he would never, ever survive outside the womb, they weren’t really sure how much longer he’d survive inside either. Even though, on all the scans, Jesse looked perfect to us – always bouncing and waving away.

Jesse had something called ‘body stalk anomaly’ – it wasn’t genetic, but merely a blip in his development which starts at around week six of pregnancy, but often isn’t picked up until many weeks later.

We were told body stalk anomaly affects 1 in 14,000 (although medical professionals now think it is more like 1 in 40,000) and our darling little boy had to be that one.

Put simply, it meant his abdomen hadn’t closed up as it should, so all of his organs had grown and developed outside of his body – the only organ left inside was his tiny heart, which had dropped down into the stomach area, as there was nothing else to hold it in place.

Despite all of this, Jesse’s heart was beating perfectly right up until the very end. His face was simply perfect – we got to see it in detail at our last, heartbreaking, 3D scan.

He had the tiniest button nose – just like Jax. I wonder if they’d have looked alike. Been alike? These are questions I think of – time and again – even now, 14 months on.

The impact of TFMR can be immense

TFMR brings not only grief and heartbreak – as losing any pregnancy does – but it also brings a sense of guilt, and for some – shame and regret.

Some women have told me they struggled to bond with their subsequent pregnancies and babies after a TFMR because they felt they’d never dealt with it properly – they didn’t know where to get the support.

As a result, these women’s mental health has suffered hugely. A few said they’d never told anyone apart from their partner – not even their closest friends and family – that they were too scared to tell anyone else, for fear of being judged.

We need to work to end the taboo

This is simply heartbreaking. TFMR must stop being a taboo subject.

There has to be support given to these parents, just as there is for those who lose a baby through miscarriage and stillbirth.

As you sit here reading this, another 14 much-wanted babies today will be lost due to TFMR.

That’s approximately 28 parents, who will be handed a guilt and grief so heavy that at times they’ll feel like they’re drowning. We must include TFMR in the conversation around baby loss awareness.

Our grief is also valid. We’ve lost our babies too.

Read this next: How to request a baby loss certificate