TFMR (Termination For Medical Reasons) – A Baby Loss Never Talked About

The conversation surrounding TFMR (Termination For Medical Reasons) baby loss is still incredibly limited, leaving many women feeling ashamed and guilty after their experiences. A very inspiring Zara breaks the silence and tells Fertility Help Hub about her TFMR baby loss, the impact this had on her and why, together, we must speak up and break the TFMR ‘taboo’.

Over to Zara….

@littlenorfolkcottage

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 TFMR (that’s Termination For Medical Reasons).

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. Oh, 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.

TFMR: The Stats

Very rarely will you see TFMR being written about; it’s never included in any studies or research. Yet it happens to almost 14 babies every single day. EVERY 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 DHSC, there were 3,269 TFMR during that same time period. This number is also thought to be at least 2,000 short, 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 had I have 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 him and that will never heal. But I would have felt I wasn’t alone, and like I was the only one that this had ever happened to. Losing my baby to TFMR so isolating, frightening, 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 3-year-old son Jax, I came out the other side.

TFMR: Our Experience

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.

Overcoming Decision Fatigue – How to Keep the Fertility Options from Overwhelming You

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 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, heart-breaking, 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

TFMR brings not only grief and heartbreak, as losing any pregnancy does, but it also brings a 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 as they didn’t know where to get the support.

As a result, these women’s mental health has suffered hugely – some women said they’ve 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.

TFMR: The Taboo Topic

This is simply heart-breaking. TFMR must stop being a taboo subject. There has to be support given to these poor parents, just as there is for those who lose via miscarriage and stillbirth. As you sit here reading this, another fourteen 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 all the talk on baby loss awareness.

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