A few weeks ago I posted a blog post opening up about my experience of TFMR, seven years ago. It was something that despite years of processing the trauma and healing, still felt incredibly difficult.
Having hovered over pressing publish for almost two years, I finally felt compelled to break my silence, and perhaps contribute to shattering the stigma that I know is felt by at least 5000 women a year. (Petals, 2021).
In the weeks that have followed I have realised that this step was perhaps an exercise in letting go of some of my own complex emotions; guilt, shame, fear that despite moving on with my life, have lingered in the background even since the grief and sadness have faded.
And yet, in this simple process of sharing, I have released something. I have felt lighter, and been able to connect with other women going through this life changing experience, perhaps who have struggled to relate to anyone in their own real life circle who can fully understand. That in itself feels a positive impact; a way of turning our darkest days into a small beacon of light for another.
So, today I want to continue this conversation, by opening up about some of the unique moments I, we, experinced on our TFMR journey. To release them from my grip, to free myself from my silence and to raise awareness and shine light on the inexplicably difficult experience, in hope that it may reach someone else who needs it.
On the day of our twenty week scan (at 21 and a half weeks) we bumped into a friend of a friend in the waiting room. As we sat, waiting and exchanging notes on our second pregnancies, we cooed over names and gender revealations and all the usual. This couple were called in ahead of us and we waited while they had their scan, waving goodbye to them as they departed the room, smiles and scan photo in hand. I often wondered why us, and in some weird parrallel universe, saw myself walking away with the positive outcome we had stolen from us. Obviously, that thought tore me up with guilt, as I wouldn’t wish this on anyone, but for the years that followed, every time I bumped into that lovely lady with her baby, toddler, son, it was always a constant reminder of what could have been.
Scans had always been a time for excitement and joy until that day. We had been so focused on whether we would find out the gender of our second child, the thought of anything else stealing the news of the day had totally escaped us.
Even as the sonogropher ran through all the checks, leaving one to double check at the end, we still hadn’t twigged anything was wrong. We carried on and found out the gender (a girl) and it was only when the sonogropher left to get someone to come and help, that I started to feel nervous that something wasn’t quite right.
As the team worked over our babies heart, sharing their concerns that they suspected a condition had been detected, I still clung on to the hope that there was some kind of mix up. They could not be 100% sure, but they didn’t want to commit either way. My husband left the room and threw up, while I lay, bewildered and confused covered in KY Jelly.
If there was ever a moment that confirmed things had taken a serious turn, it was being shown into ‘the room’. The one with nothing but a sofa and a box of tissues, to wait for someone to come and talk to us.
It was here we realised we were facing a big problem, and as we fell apart, we were interrupted by a lady who grumpily evicted us, declaring the room was booked out for someone else.
As we apologised and retreated to the waiting room / corridoor, the tears flowed. We were rescued by a midwife who took us into a vacant office and made phone calls to book us in to the Evelina the following day for confirmatory tests.
We left the hospital with a fact sheet printed off the internet about the suspected condition and advice not to try and google the answer. We collected our daughter and stopped to pick up sparklers and burger buns for the firework party we were hosting for two dozen friends and family that evening. With plenty of brave smiles and ‘It will be fine’s’, the show went on and we desperately clung to the hope that this was all one huge mistake.
When time stood still
There will have been moments for plenty of you, of us, where life seemed to be playing out a scene from an emotionally charged movie. I can now understand the phrase ‘the moment my life fell apart’ with full appreciation, as the following day we did indeed receive confirmation that our baby had a congenital heart defect that made her incompatible with life.
After the gentle and kind sonogropher had taken all the measurements in a dim room, we were greeted by the consultant foetal cardiologist who talked us through the condition, what it meant and the options we were faced with.
As the words came out of her mouth, my world collapsed. I struggled to breathe, my heart was racing and I felt dizzy. As she continued to talk I had to hold up my hand and ask her to stop for a moment so I could gather myself and take in what she was saying. I escaped to the bathroom and splashed water on my face, and returned to the room, numb, dazed but trying my hardest to listen and absorb what seemed the most important conversation of my life.
We decided to eat something before we got the train home, and I often wonder if the BBC newsreader ever wondered why the lady sat next to her in the restaurant that day cried the whole way through her lunch.
Of course, no bombshell like that can be dropped without time to reflect and digest. We didn’t have long to make our choice, and it wasn’t immediately clear. Not for either of us, but particularly not for me. The maternal pull to protect my precious cargo kicking inside of me was strong, and the agony of knowing exactly what to do was unbearable.
We drove to the kent coast the following day and spent time on the freezing beach watching the waves crash. Spending a strangely calm and happy day as a family for the last time, as we made peace with what we needed to do.
Just hours later, we arrived at a different London hospital to undergo a procedure called foeticide, wherby a lethal injection stops the babys heart prior to being induced – a requirement of TFMR at our gestation of 23 weeks.
We sat in the sonogrophy waiting room, surrounded by women waiting for their scans and collecting their photos for what felt like hours as we waited for our senior sonogropher to be available to administer the procedure.
After a while, my Dad who had driven us, had a word with someone and we were apologetically moved to what I can only describe as the store room in a late bid to protect us from the distress caused by the waiting room. Unfortunately, as we waited and waited, there must have been half a dozen surprise visitors to the room, who were not looking for us (extra loo roll or gloves maybe?). Every time my heart burst out of my chest.
Of course, it eventually was to collect us, and I laid on the bed, lifting my jumper to reveal my bare tummy which days previously I had nestled and cradled from bumps and knocks. We were scanned and sensitively comforted by the incredibly proffessional doctor; The room was silent, until the moment the needle pierced my tummy, and out of no where, the words “I’m sorry” filled the air.
Following the foeticide we drove home in a daze, calling by our local hospital maternity unit to collect and swallow the drugs that would prepare my uterus for labour. With a warning that a spontaneous delivery could occur, we were advised to rest up and lay low until we returned to be induced in 48 hours.
We used that time to snuggle down and watch TV, eat food and try to remain calm. Panic attacks were frequent and we walked the streets at ten pm one night just to try and calm me down. The stars were shining bright and we spent alot of time looking up at them, wondering what the hell was going on and how we had ended up here.
We returned to be induced later that week, grateful to have not dealt with that alone at home. I received a pessary to bring on labour and was set up with a wonderful midwife in a special room on the maternity wing. We chatted, strangely, we laughed and we waited.
As the contractions kicked in I was given a strong dose of morphine (which you can have when the baby’s welfare is no longer a factor), and honestly, it felt like I was watching myself on the bed from the ceiling.
After 12 hours or so, I delivered our daughter, asleep. She weighed one pound and measured thirty centimetres. Her hair was dark and her fingers and toes perfect. She was brought to us in a tiny pink knitted dress with a single heart shaped button, in a little basket. I kissed her goodbye, and we left the hospital for home.
Laying to rest
We had naively thought we could sprinkle her ashes in our garden or under a tree, with minimal fuss. Conversely, her ashes could not be made available to us, and a cremation was a requirement – we did not have to attend if we did not wish to.
Of course, the latter felt barbaric, so we agreed to attend her funeral, just the two of us as a final mark of respect. We chose music and brought a small posy of flowers for her tiny casket which was carried into the room from a hearse.
We let go of our tears in that room, on the 6th December, one month after our scan, and then we went home and put up our Christmas tree.
Returning to normality
I didn’t go back to work for 8 weeks. Because that felt right to me. I was an emotional wreck and struggled to face people. For the first time in my life, I longed for privacy and to be left alone. It felt unbelievably hard to see anyone for the first time afterwards, and get that awkward conversation out of the way – after all, everyone had known I was pregnant, I was 23 weeks and showing clearly. On my first day back at work the lovely cleaner I always made small talk with stopped me as I popped out of a meeting to use the loo and asked me if I had had the baby, she hadn’t seen me in ages. I felt as bad for her as I did for myself when I had to tell her it hadn’t quite worked out that way, before returning to a packed out meeting room, trying with everything I had to hold my shit together.
Most people were of course amazing. The kindness was breath taking and the gestures as small as a hand on my shoulder at work were unforgettable. Our house looked like a florists and we ran out of vases.
But perhaps, what meant the most were the people who shared our pain with us. Those who still do hold her memory special, all these years later. Who acknowledged her existence and who did not avoid the conversation; just like we never wanted to.
I still do not want to. Our life has moved on, but these memories are as fresh as yesterday, and it is okay to talk about them. In fact, I need to talk about them to heal and to acknowledge what we went through. It is both freeing and carthartic, a breath of fresh air, of self forgiveness and of self love.