"I felt like a fraud." The complicated grief of losing one twin.

Content warning: This post contains the loss of a child and could be distressing for some readers.

The emotions that come with any pregnancy loss are complex. Sometimes surprising, sometimes completely unsurprising, but always simmering away just beneath the surface. All that you can hope for is that you learn how to manage and cope with these feelings, or at least recognise them, as they will almost certainly be part of a permanent journey.

My own journey with loss is something I’m still trying to wrap my head around. In the beginning, I had so many conflicting emotions I felt like I was going to burst. But it’s still hard to fathom on the best of days, two years on. Because while I lost one of my identical twin daughters at nearly 20 weeks, the other has survived against all odds. And juggling grief with the most joyous thing in your life is complicated.

Watch: The reality of parents who's living through grief of child loss. Story continues after video.

In early 2020, I felt like I was winning some sort of conception lottery when the sonographer told me there were two heartbeats and "Congratulations, you’re having twins". I think my husband’s reaction of "Holy sh*t" succinctly summed up how we were feeling.

Immediately, you feel like it’s even more of a special pregnancy, like you’ve joined a new secret multiples club you never knew existed. And of course, your mind goes straight to double everything – double cots, highchairs, onesies, with the cute vision of two identical little babies.

We found out early on they were girls and named them Violet and Rose – preferable to Twin A and Twin B as they were known on the scans. We didn’t know choosing the name Rose would come to feel very symbolic. 

I was 16 weeks pregnant before we had any indication anything was wrong. My twins were monochorionic, meaning they were in separate sacs but shared a placenta. It’s uncommon to be carrying monochorionic twins and can come with a range of complications as they share blood supply and nutrients. 

One of the doctors at the twin clinic in the Royal Hospital for Women noticed there was a disparity in the level of amniotic fluid in their respective sacs, an early indication of Twin-to-Twin-Transfusion-Syndrome (TTTS). 

In a nutshell, it means they were getting inequal amounts of blood in the placenta. The prognosis is bleak. If left untreated it’s almost always fatal for both twins. Doctors explained I’d be under very close supervision for evidence the TTTS had progressed as they’d then need to intervene with risky surgery - an endoscopic laser ablation of placental vessels that’s got a 75% chance of one twin surviving.

Violet was the twin getting too much of the supply and Rose, not enough. It’s usually worse for the twin getting more as it can put too much pressure on their heart.

Ironically, I’d written about TTTS in my career as a journalist, so knew the severity of what we were dealing with.

I was scanned twice a week, with the view I might have to have the surgery at a moment’s notice, but in my 20th week of pregnancy, Rose passed away. We were told at the scan she no longer had a heartbeat and I remember even in that very moment feeling the horrific duality: “But what about Violet?”

It’s something I still feel guilty about. The fact we had to compartmentalise Rose’s death during that time and put all our energy into focusing on Violet’s survival.

We then had an agonising five-week wait before doctors could do an MRI of Violet’s brain to see if Rose’s death had caused it damage.  I honestly don’t know how I got through those five weeks with the prospect of a double stillbirth too much to bear.

The MRI thankfully came back normal, but the horror pregnancy wasn’t finished with us yet, and my waters broke just three days later.

Violet was born extremely prematurely at 26 weeks and was rushed to the NICU where she spent her first 77 days. 

While finally getting to say goodbye to Rose was undoubtedly the most harrowing thing I’ve ever had to do, half my mind was still on my other daughter who was in an incubator.

Words can’t express the intense conflicting emotions at that time. We were dealing with severe anxiety, grief, but also hope and happiness. 

Violet defied all odds and got stronger every day, and I am so proud of her. The day we took her home was incredible.

Image: Supplied. 

But coming home was also hard after such monumental heartbreak. I now had to adjust to being a preemie mum and a loss mum. It was one big, weird paradox.

Trying to keep grief as a separate entity when it’s so intertwined with the biggest joy you’ve ever known is tough. You feel like you don’t want to admit you’re struggling as you should be ecstatically happy your child made it through the NICU, which I obviously am. But I am starting to talk more about Rose and try to rid myself of the pesky guilt that has plagued me ever since.

Nowadays, it’s becoming less taboo to talk about loss, and thank goodness for that. Lots of loss mums have accounts on Instagram that pay tribute to their babies and these accounts are undoubtedly a source of great support for others going through this unspeakable pain.

But here’s the thing: I still can’t help but feel like I don’t belong in that category. See what I mean about that pesky guilt? It was hard to read stories of loss while I was still very much in the thick of tending to a newborn. It made me feel like a fraud.

A therapist said very early on I had to be prepared for people making comments like, “At least you still have one twin,” and not being sensitive to the death of Rose, but I did feel lucky to still have one twin after being so close to losing them both. Of course having Violet was the biggest comfort of all.

Image: Supplied. 

My complex journey is far from over and I know it’s always going to be a bit of a tightrope in how we honour Rose. I want to make sure Violet knows she has a guardian angel twin but the thought of her feeling like a ‘twinless twin’ or that she’s missing a part of her is excruciating, so it’ll have to be handled with care. It’s strange for me knowing there should be another identical version of her, so I can’t imagine what it will be like for her.

Roses have taken on a special meaning for us, and I love the fact my husband buys them for me and that’s our quiet way of marking her existence. I hope Violet gets some comfort from them too.

I often find myself wondering what it would be like for Violet to have an eternal playmate, and whether they would have the same extremely cheeky and headstrong personality, as they have the same DNA. I’m sure I would be getting ganged up on already and they would be double trouble.

Our tangible memories of Rose are mostly limited to little things. The scan videos where it looks like she and Violet are playing together, the ink footprints the wonderful staff at the Royal Hospital for Women took of her teeny tiny feet, a doll that was part of a matching set, and the stunningly secluded spot in my native Scotland where her ashes were scattered.

But I feel her loss acutely. When I look down at the double stroller that holds a side cart instead of the second seat it was supposed to. When someone asks me if Violet is my first and I must choose between lying or an awkward exchange. When I see twins at the playpark with their special little bonds. Or when a beautiful rose blooms in my garden.

And I see her every day when I look at Violet.

Image: Supplied. 

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You can download Never Forgotten: Stories of love, loss and healing after miscarriage, stillbirth, and neonatal death for free here.

Feature Image: Supplied.