TFMR due to Trisomy 18, Edwards Syndrome

At the beginning of this year we lost our baby. It still shocks me to say that. 'Lost' is such a strange word to describe the horror of what happened.

We didn't lose her like a remote control lying forgotten under the sofa. There are no suitable words, but I am acutely aware that other's reading this will be hanging on each sentence desperate for hope, reassurance and answers as they go through this unimaginable situation. The beginning of my pregnancy was normal - I had a lot of sickness and was tired all day but when we had our 12 week scan and saw the baby kicking frantically and heard the little heart beat it made it all worthwhile. We left feeling content and reassured. A couple of weeks later I received a call from a withheld number. ‘It’s the hospital with your test results', my heart beat quickened – a phone call is never a good sign. The midwife said my screening results were fine but we had the lowest PappA score she had ever seen (0.07). We were referred to the Fetal Medicine Unit who were fabulous and reassuring – we would have more regular scans but no need to be too worried at this stage.

We decided to go for private genetic testing, just in case. Another phone call one evening told us that it was very likely our unborn baby had Trisomy 18, also known as Edwards Syndrome. I didn’t know what this meant but from the look on my husband’s face (who is a doctor) I knew it wasn’t good. In fact it is the worst – 95% of babies die in the womb and the vast majority of those that survive to full term die within the 1st year after a painful and difficult life. They describe Edward’s Syndrome as ‘incompatible with life’. But when they sent over the test results via email that evening the only word I could see was ‘FEMALE’. I cried on our kitchen floor.

The next few weeks I just retreated to my bed, my work were very good and I was able to switch everything off and just focus on trying to get through this as quickly and painlessly as possible. After having to wait a number of torturous days we got another appointment for a scan – seeing her again knowing what we now knew was one of the most painful experiences. She was still kicking and growing, not knowing what we were about to do, I felt like I was betraying her. The sonographer didn’t say anything during the scan, and when he finished he moved onto sorting out the equipment for the amniocentesis. I had to ask ‘could you see any signs?’, ‘oh yes, she has a hole in her heart and…..’ his voice disappeared into a fog, a rush of blood in my head, my heart beating loudly in my ears. As the internal noise died down I realised he had stopped listing the horrors and was preparing the needle. I sat up dislodging the tissue paper and wept briefly, asking why I needed another test to confirm what we clearly knew – this was in order to be 100% sure, so we would be legally entitled to a Termination For Medical Reasons (TFMR). I still can’t believe we had to go through an invasive test and more days of torturous waiting for this reason.

A midwife with a sympathetic tone rang to give us the amnio results a number of days later. There are only so many times you can hear people deliver the same bad news, I just wanted to scream ‘I KNOW! Now will you please help me end this nightmare’. Every day she was getting bigger, every day I could feel her kicking harder, and every day I desperately loved her more.

I had a procedure called dilation and evacuation – basically a procedure to soften the cervix followed by an operation 24 hours later to remove the baby. After the operation the surgeon held my hand and told me the baby was already dead when she came to do the termination, likely dying in the last 24 hours. I couldn’t stop sobbing but in the days that followed I realised how lucky we are that we never have to wonder 'what if?’; what if we hadn’t terminated, would I still be pregnant now? Would she have been born alive? Would she have fought gone against the odds? Would she have made it to her first birthday? Second… third… fourth? Were we wrong, or evil, to have decided to terminate? None of these questions are rational, but my heart goes out to everyone who has had a TFMR and lives everyday silencing these thoughts.

For a number of days I just felt empty and hollow, physically and emotionally. The day I went back to work my milk came in to feed a baby that didn’t exist. Still, my baby hairs poke up on zoom calls taunting me.

The pandemic made it more horrible, appointments were cancelled due to isolation, procedures delayed while waiting for covid test results. My husband wasn’t allowed in to hold my hand while I screamed as they pushed dilation rods into my cervix, or help me answer 'what would you like to do with the body?'. There were numerous times I sobbed in waiting rooms while he sat anxiously in the car park.

But there is something about a terrible situation that also makes you count your blessings. The care we received was excellent, both clinically and on a human level. I will never forget the nurse who covered me a warm blanket just before I received the general anaesthetic ('I warmed it on the radiator to make you feel more comfortable’), or the midwife who stroked the hair out of my face as I screamed in pain. We were so lucky that our local hospital happened to have a Fetal Medicine Unit, as well as a unit that does surgical terminations at a late stage. People travel across the country for the hospital that was on our doorstep. We were lucky she passed away peacefully and lucky that the diagnosis was relatively clear-cut. And we are so incredibly lucky to live in a country where late term terminations are not only legal but also rarely used as a political football. And throughout the torturous waiting and lack of clarity about what might happen next – ARC were there like a friend with sensible, knowledgeable advice and warm hearts. Friends and family were very generous and kind with gifts and support but as we all know, grief and trauma last longer than sympathy and I am learning to live with this being a part of me forever.

My partner and I immediately knew we wanted to terminate, which to some will be a shocking thing to admit. I knew I wanted the operation rather than be induced to give birth to her as I think I would have found meeting her incredibly traumatising. We didn’t have a funeral. We don’t know if we will try again. I don’t know if any of these are the right decisions. To be honest we had no idea how to respond. There isn’t a ‘right’ or even a ‘normal’ situation.

The only thing I do know is everyone deals with this kind of loss in different ways, and you must do whatever it is you need to do to get through that day. Those reading this going through a similar experience, you are not alone. I survived the unimaginable and you can too.

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Thank you to Ellie Robinson for sharing her daughter and her story x x x