TFMR, termination for medical reasons or sometimes known as termination for fetal abnormalities. A type of baby loss that isn’t a miscarriage or a still birth. And one that shockingly isn’t included in the ‘one in four’ statistics around baby loss. But it’s unfortunately more common than many of us are lead to believe. It’s silenced through unnecessary shame. The taboo within a taboo. So many of us feeling too scared to openly say “I had a TFMR“.
Before you read on, this story may be triggering if you are pregnant or TTC.
Our story
We always knew we wanted to grow our family. Imaging 2-3 children all growing up together, a house filled with loud laughter and lots of love. But like so many, the journey to bringing home a sibling is proving more difficult than I first imagined.
I first joined the worst girl gang ever, the world of baby loss and became the ‘one in four’ statistic in 2022. I had a missed miscarriage, discovered at 11 weeks. Baby passed just before 8 weeks, days or hours after we’d had a ‘healthy’ early scan. I was heartbroken. We muddled through those weeks and months reminding ourselves to feel gratitude for having a healthy son already, whilst grieving the sibling we longed for.
Our 2022 due date arrived and I was greeted by the most beautiful rainbow on a teary walk. A sign from above, our rainbow would join us one day. I remained positive and a few months later, a positive pregnant test confirmed our suspicions.
Pregnancy after loss
The first 12 weeks were difficult. Pregnancy after loss was certainly different to my previous pregnancies, I’d lost all naivety that a positive test results in a baby. I lived week to week and tried my best not to think too far ahead. We got through an 8 week and 12 week scan, leaving each with a huge sigh of relief.
From 12 weeks we started to get excited and think towards our due date. Our miscarriage must have been a ‘blip’. I was just one of those women who experienced early loss between two healthy preganancies. I kept telling myself that situation was common.
We shared our happy news with friends and family but decided to keep it from wider friends/ social media until the 20 week scan. We had done so in our first pregnancy so it wasn’t anything unusual for us.
The 20 week scan
I remember waiting to be called for that 20 week scan, the anomaly/ screening scan. We were naively talking about babies gender and how to tell everyone whether I’d be a boy mum or if we’d now have one of each.
The girl who walked into that scan was a completely different one who walked out 20 minutes later. In fact I don’t think I’ll ever be back to that girl again. I don’t think I want to be in fact.
We were desperate to see a heartbeat- and the sonographer kindly put our fears at rest by pointing this out quickly. But the rest of the scan was silent. Too silent. Her voice was soft and kind when she explained she needed a second opinion. The senior sonographer was also kind, with compassion in her eyes when she mentioned a referral to fetal medicine. A referral to discuss if our baby was ‘compatible with life’.
I can’t remember any other words they used, but I do remember apologising for making their Monday morning a tough one and instructing my husband that we couldn’t cry because we’d scare the parents in the waiting room. It’s funny where your mind goes to in moments of trauma.
Hydrops Fetalis and Cystic Hygroma
We only needed to wait 24 hours and we found ourselves in the fetal medicine department. Our consultant was compassionate and explained things in more detail, including the tests she suggested we have in the coming weeks. Things weren’t as black and white as they had seemed the previous day, the road ahead was long.
Our baby was diagnosed with hydrops fetalis and a cystic hygroma. Hydrops, is a condition in which large amounts of fluid build up in a baby’s tissues and organs, causing extensive swelling. It’s a life threatening condition and a sign of other underlying health problems. Cystic hygroma is a birth defect that appears as a sac-like structure that most commonly occurs in the head and neck area.
It was looking extremely likely we wouldn’t be bringing our baby home, but how we reached that point was currently unknown.
Diagnostic testing and chromosomal conditions
Two days later we returned to fetal medicine for various blood tests and amniocentesis.
I’ve been needle phobic my entire life, and the thought of amniocentesis has been a long term fear. If you’re reading this and due to have this test, let me assure you, it wasn’t as scary as I expected. I didn’t feel anything more than a sharp scratch and it was over within minutes. I’m a big fan of meditation and breath work and using both of these techniques really helped to keep me calm.
Our results came back 5 days later. Our baby had a chromosomal condition, and it was confirmed he was a boy. We had a much loved, much wanted, second son.
Our fetal medcine department were fantastic. We were given time, guidance and transparency. We opted for regular scans, silently clinging on to a slither of hope that his hydrops would resolve itself.
It didn’t. And every week the fluid was increasing and causing him to go into heart failure. Our consultant had mentioned early on that this may cause him pass away naturally, but it was clear he was a fighter. My placenta was doing an excellent job of keeping him safe- although it was worryingly placed over my cervix. We knew we’d be delivering our son before 40 weeks and currently this meant via C-section.
As weeks 20-23 passed, I grew bigger by the day. The fluid retention baby was experiencing, due to Hydrops, meant he and my bump were much bigger than expected. At 23 weeks I measured closer to 32 weeks in my first pregnancy. This rapid growth also led to a decline in my health and I experienced fainting episodes, meaning I could never be left alone and couldn’t drive.
Why would we choose TFMR?
Possible TFMR (Termination for medical reasons / termination for fetal abnormality) had first been mentioned at the 20 week scan. It’s something I’d heard of previously, but I didn’t know anyone personally who’d experienced it in the second trimester. It certainly wasn’t something I’d even of imagined happening on our journey to grow our family.
Facing a decision of TFMR is a time and space like no other. Walking into a fetal medicine scan hoping to find that your precious baby has either a) made a miracle recovery or b) died naturally is an incredibly strange place to be in.
We clung onto the hope that we wouldn’t have to make that final decision for weeks, but it became clear it was the kindest thing to do for our beloved son. We knew he was too poorly to ever make it home. IF he survived birth he’d live for minutes, hours at most. And those moments would have been filled with pain and suffering. That’s something I just couldn’t put my child through.
‘Choosing’ (and to be clear, this is no choice anyone wants to make) TFMR in our case, was not choosing IF our son would die, it was choosing WHEN he would. And we wanted him to be pain free, warm, feeling cosy and loved and hearing the comforting noises of my heartbeat. We were taking on the emotional pain of letting our son go, so he would never experience physical pain.
And it was the hardest decision I’ve ever had to make.
When to TFMR
Just past 23 weeks we discovered my placenta had moved just enough to allow our baby to be born without surgery. This was a huge step as the c-section wasn’t going to be straight forward and could change the future of our family forever.
Our babies condition was also detreating (as was mine) and it would make the TFMR procedure more complicated. We were also running the risk me going into natural early labour, meaning our local palliative care hospice would become involved in babies care.
It seemed like we’d all reached the point of no return, we needed to put babies, and my, health and wellbeing first. Even if it was the last thing on earth we wanted to do.
I had a TFMR
I’m going to close part one of our story here, as I know it’s a lengthy one. You can read the next part, which includes our birth story, here-
If you’ve read this post because you have or are going through this- I’m so sorry you’re on this path too. My heart goes out to you, and my emails are always open if you want to talk. If you’re struggling please do get in touch with ARC- Antenatal Results and Choices (ARC) – non-directive information and support before, during and after antenatal screening (arc-uk.org)
If you’ve read it out of sheer interest- thank you. Because sharing TFMR stories to those who haven’t experienced it only helps to shed the fear of us talking about this type of baby loss. It helps to smash the taboo. It helps us all understand what friends, family or colleagues may have gone through.
Sian x
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