Despite the happy chaos of our everyday family life, the trauma of losing our second daughter is never far from my mind. It’s a grief that has undoubtedly eased and lessened with time, but one that we carry with us as part of our very being; our family story and a memory that is important to preserve.
Whether a song on the radio, a name called in the supermarket, the time of year or a brush with a shared experience as life passes us by, the triggers, the flash backs or the sudden transportation back in time to a very dark place are all too easy to come by.
At Christmas a couple of years back, exactly that happenned as I found myself sharing our story with a grieving mother, raw in the early stages of devastation that come with being dealt the shattering blow that your much loved and wanted baby has a fetal abnormality.
“No one talks about it.” The words she sobbed to me echoed in my mind for days. The shame and complex emotions about having to end a pregnancy that you long to be healthy, to be normal, to be non eventful, are difficult for others to understand. The unique circumstances separate those of us who have had to endure this crushing weight from others in a way that is almost impossible to explain. Because, for us, that coffee shop discussion of ethics, of ‘what would you do’ became an unbearable reality.
When a fetal abnormality is identified in your unborn child, the initial shock prompts that first wave of emotions. Denial, confusion, numbness, nausea, disbelief… whether at the 12 week scan, or the 20 week scan or any other look inside for any number of reasons. You went in that room hoping to wave hello at your precious cargo, and left with your heart shattered into a trillion tiny pieces – if you can even remember leaving at all.
Often, the initial diagnosis requires follow up confirmation, leaving an agonising wait – even if it is minutes or hours away. Time to visualise every scenario in your mind from ‘they got it all completely wrong’ to ‘what happens now’ to ‘our dream is over’.
Then comes the second blow; there was no mistake. Under the careful eye of specialist scans or test results, the words are spoken which crush you, leaving you unable to breathe, to focus, to comprehend what is happening.
For me, at 23 weeks, as my baby kicked inside me, hearing that she was incompatible with life due to a rare and complex heart abnormality, was the moment my life changed forever.
Surrounded by the kindness of strangers but lost in my own tear stained nightmare, we listened to the prognosis, the heavily medicalised options which involved surgeries with poor survival rates and were told our daughter would likely not survive past childhood. Intervention was required, one way or the other, because without any she would die immediately after birth, but not before. Any care offered would be purely palliative from the outset; a frightening realisation that her life would always be lived short, and all we would be able to do for her is extend it beyond it’s destiny.
Afraid of every outcome, we waited for the fourth option , the option which was not a living nightmare – it never came.
The hours that followed, we cried, we searched the internet for stories of survival, stories of heartbreak and stories which tore us apart. All the while our one year old daughter played at our feet and well meaning friends and family around us told us ‘they were sure it would all be okay’. After all, we were way past the 12 week stage, and they all knew someone whose child was told they’d have a complexity, that turned out fine. Just fine.
But the medical profession told us different. A 10 / 10 severity and whilst a difficult decision, one that they felt with time to think, we would come to that was right for us and our family.
And so, after spending a day on the Kent coast, in the cold November air as a family, we made our choice.
And then came the next blow.
Because unbeknownst to us, the process of saying goodbye would not begin and end with a general anaesethic, nor a scalpel an unconscious process – I would have to deliver my 23 week old daughter naturally. But, due to her gestation, her heart would have to be stopped by lethal injection prior to being induced, a brutal process called foeticide which until that day I could never have fathomed.
Our nightmare was far from over, it was just beginning.
As the next week passed by in the blur of flowers, salty tears, sleepless nights and surreal moments of calm, we made our peace. We held our tiny daughter who weighed just a pound in our arms and we kissed her smooth and perfect face goodbye.
My post partum body was not the only reminder of my experience as I recovered in the following weeks. The memories of a traumatic childbirth, softened only by the high quantities of pain relief you can tolerate when you don’t have a babys welfare to consider were fresh in my mind, and I still find it hard not to throw that 12 hour labour into the birth stories mix over coffee and cake with the mum friends.
And of course I did not bring home our daughter, I brought home a memory box with her footprints, her photos, a duplicate teddy that she was taken away with, the details of how to arrange her funeral and a heart shattered into pieces.
I have, like many other parents who have decided to ‘interrupt’ pregnancy, never really felt like I made the right decision. We made a decision, one we had to in the most devastating of circumstances. One that we have to live with for the rest of our lives, always wondering ‘what if’. We live with the heartbreak of telling people we lost our second daughter, whilst inside we know that description is only part of the truth. The guilt and fear of judgement is unimaginable, and the grief we experienced is still very much just below the surface.
I guess you may wonder why I’ve decided to share this now – seven years on. I suppose in light of that sad lady’s words I was compelled to write this post. We need to talk about this. As the profile of baby loss and grief rises, amongst the wave of light and the stars in the sky, are our babies. The ones we lost to horrendous conditions, the ones we saved from suffering and pain, at the cost of our own.
But this sat dormant in my drafts for over a year; until through listening to a podcast on The Worst Girl Gang Ever last week, I considered again why I hadn’t had the courage to hit publish. Knowing how hearing another shared the weight, it encouraged me to revisit this post and in be part of a louder chorus of hidden voices – ones which no longer belong in the dark. Yes it’s scary, but it’s also important, and the latter now feels the bigger force.
This is our story, our sharp edges still healing from being broken beyond repair. They may never fit back together, but I’m tired of sweeping them under the rug. This is our truth, our heartbreak and it’s far from a dirty secret. No one can ever punish me as much as I punish myself over what happened, the choice we made, and whether we did the right thing – because honestly, I’m not sure I ever really will, not 100%.
So open your mind to the pain and complexity of TFMR, and if you find yourself wondering ‘what would I do?’, know that I truly, truly hope you never have to find out.
In a world where kindness and love should prevail, it’s time we put our arms around each other and allow our grief to come out of the shadows.