'I went to have my final IVF embryo implanted. I was told it was gone.'

This post deals with pregnancy loss and might be triggering for some readers. 

Two years ago, I had a hysterectomy. 

It was my 15th surgery to manage the debilitating pain and menstrual bleeding that I was experiencing due to a mix of endometriosis and adenomyosis. 

The last thought that I had as the room started to blur and the anaesthetic started to take me off to dreamland was, 'what will happen if they ever find my embryo and I no longer have a uterus?"

Watch the trailer for Mamamia's Get Me Pregnant.

Our eight and ten-year old boys are both from the same IVF cycle. 

When people tell me how much they look alike, I often comment: "Same dish, same day. The little one just has all the attitude because he sat in a freezer for two years."

We embarked on our In-Vitro Fertilisation (IVF) fertility journey when my husband and I were aged 26 and 27. 

With a pelvis already ravaged by stage 4 endometriosis we were advised that IVF was our only option of achieving a successful pregnancy. 

We started the process four months before our wedding with zero expectation of our first embryo “sticking”, however we were lucky enough to announce at our January wedding that we were expecting a baby.

During our vows my husband proudly proclaimed, "I take you, as my best friend and the mother of our baby, to be my wife," his hands proudly cradling my growing bump just in case any of our guests missed the punchline. 

In June we welcomed a beautiful baby boy. Our next round of IVF was more complicated. The first embryo they defrosted wasn’t viable and so we opted to defrost another. 

This embryo divided in my uterus after it was transferred and resulted in a beautiful set of identical twins. We suffered the heartbreaking death of one of the babies during the pregnancy, however I carried them both to term and birthed them both. 

We walked out of the hospital with another gorgeous baby boy.

We had his twin brother cremated and his ashes scattered in a 'babies garden' at the park at our local crematorium. 

We still visit him regularly and we have woven his story through our family, making his siblings aware of his presence in our family without asking them to walk our grief journey. 

Listen to Mamamia's IVF and fertility podcast, Get Me Pregnant. Post continues below.

The heartbreak of carrying one live and one dead baby for months on end is soul defining. 

It's a grief that can’t be explained unless you have experienced it. We were terrified of experiencing it again, yet we were keenly aware that we had one last embryo from that dish. 

We shed thousands of tears, had hundreds of hours of discussions on road trips, drank tens of bottles of wine, while we mulled over this very big decision. 

Nearly four years after birthing the twins we finally decided that life was too short, and we didn’t want to wonder anymore. 

We decided to use the final embryo. We did all the preparation work and got the call three days before with our embryo transfer time and date. We were so excited to give the embryo a chance. 

Three days later, we arrived at the IVF clinic, got gowned up and ready to go into theatre (my husband has come in for all of our embryo transfers because it was important to us to at least have one of us awake while we were conceiving a baby). We were about to be wheeled through the theatre doors when the embryologist came to talk to us. 

We knew this wasn’t a good sign. She explained we wouldn’t be able to proceed that day and that was that. 

We put our clothes back on and went out for breakfast instead. 

We ate very little and sat in stunned silence. 

In the space of a few minutes our fertility journey had come to an end. As the day wore on I had a gnawing feeling in the pit of my stomach that something wasn’t right. 

The language that the embryologist used had been different to our previous experiences. She had not said that the "embryo wasn't viable" or that the "embryo didn't have a life cycle."

In fact, as I recalled it, the word "embryo" wasn’t used at all. 

Later that afternoon we called the clinic for clarification and after a frustratingly long conversation where I felt like every question that I asked was being met with a scripted answer, I finally asked through floods of tears, “Did you actually visualise our embryo today?” 

After a long pause, the answer was "no". 

What had been defrosted was a vial of the fluid that embryos are frozen in, but there was no embryo inside. 

The “best guess” that the clinic could provide us with was that when the embryo was being transferred into that fluid it had become stuck on the “hook device tool” used to transfer it. And after that those tools are placed in a sharps bin. 

They said our embryo may have ended up in a sharps bin. But they couldn’t be sure of this either. In reality, to this day they have no idea where our embryo actually is. 

This hit us hard for a number of reasons. We were (and will always be) grieving the loss of one our twins and this just seemed like a second and highly unlikely cruel twist of fate. 

We also have two living children from that same cycle, conceived in that same dish on that same day, likely using that same hook device by that same scientist. 

It's so hard to think of that embryo and not imagine it as a potential baby, one that could have looked just like our other boys.

The lack of initial transparency and the bunch of assumptions that the fertility clinic made in explaining things to us after we pressed for answers just felt grossly insufficient. 

That embryo could have been our child, and it's been lost.

I’m not sure that I'll ever shake the feeling that we might get a call one day telling us that they’ve found it; that there was a labelling or storage error and that we can use it now. 

And although that would cause us a logistical nightmare (given that I no longer have a uterus), it would be far better than another potential outcome -  that our embryo has been given to someone else in error. 

That is the feeling that scares me the most.

Manuela Toledo, a fertility specialist at Melbourne IVF says:

"Incidents like this are rare, however, it's important to emphasise that when humans are working in a lab, there will always be a small risk of human error. During the IVF process, there is an up to 10 per cent loss rate for embryos going through the freeze-thaw cycle – a very small percentage of this is down to errors or accidents. There are risk management systems in place in every lab to prevent and manage this, but while it's unusual, it's not impossible for embryos to be lost. Open disclosure with patients should be standard when this occurs and they should be told of the potential risks before commencing IVF treatment."

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11 women share the most surprising thing they found about IVF.

'I went through IVF 17 years ago. Back then, infertility was a private struggle.'

"It was gut-wrenching." What it's like to watch your partner go through IVF.

If this has raised any issues for you or if you would like to speak with someone, please contact the Sands Australia 24-hour support line on 1300 072 637. 

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

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