This blog post has been percolating for a long time in my head. I am stepping back from raising awareness of the need to reduce stillbirth. This is probably not going to be noticeable to anyone but myself. I am going to withdraw myself from conversations on social media that relate to induction of labour, to weights of babies, to babies movements, to monitoring in labour. The charity I run will still support our partners like Ava’s Fund & friends like Mama Academy, Kicks Count working to raise awareness, as we always have. The Butterfly Awards will continue to provide a platform for those raising awareness. We will fund projects when we feel drawn to, but for me, as a person, I just cannot cope with it.
It is proving to be a surprising and unexpected trigger. I don’t actually even understand where I am in my grief journey right now. It’s new, and weird and not familiar. It’s not somewhere I imagined being, and I don’t really even know if I can find the words to explain it.
I know I keep harping back to the EMDR I had nearly 2 years ago. It was lifechanging, life saving. It took away the flashbacks, the debilitating anxiety, the nightmares. It did it quickly. And it took a bit of getting used to. I had to reevaluate where I was.
I spent months so grateful to not be in constant state of anxiety or numbness that I thought I was ok.
I am ok.
But I am feeling. I didn’t expect to be feeling. If you haven’t been through trauma, you probably can’t understand this, but for many, many years I haven’t felt much at all. It’s been pretty useful as a survival skill, but now my mind has realised it doesn’t really need to be numb, as we are no longer in danger.
So I now live my days quite overwhelmed by the range of
instant, and automatic feelings I experience. They are almost as uncontrollable
and intense as the flashbacks were. (In fact I question whether the feelings could
be emotional flashbacks).
I spend my days quite tearful. I cry when I am happy, when something is
magical, or cute. I cry at the news, at weddings on tv, when reading a book,
when I am laughing. It’s not always a bad thing, but I am getting used to it again.
I am also dealing with so much anger and sadness. I don’t want to be 40 years old. I don’t want to be the person who lost her baby 10 years ago. I don’t want to be the person who doesn’t have 2 living children. I don’t want to be the person who lived with trauma for more than half her life.
But that’s who I am. And I need time to accept it.
I am glad that the conversation around stillbirth is happening. I put a lot of time, effort, and heartbreak into making it happen.
But now there is debate everywhere I look.
It was easier when there were NO conversations. It feels like every post I see is trying to find a way to discourage the developments that are saving babies lives. There were days when I attended meetings locally, I would leave angry but passionate about changing the attitudes that left professionals saying things like “there is nothing we can do about stillbirth rates”
Now everywhere I look, all over the posts I see there are comments like “they should say the stillbirth rate might double after 42 weeks, but that this is still a very small number”, or “induction of labour didn’t reduce the stillbirth rate”.
The attitude shift seems to have changed to accept that we may be able to affect the stillbirth rate – but that it isn’t worth doing so.Almost every post results in various comments bemoaning the interventions for reduced fetal movement, or pointing out the faults in monitoring or scanning. Comments like “It alarms me that policy makers are making decisions but either not waiting for evidence, not understanding the evidence, or dismissing the evidence”.
The reality is that for 2 whole decades professionals sat around waiting for evidence in order to start saving babies lives. MBRACE reports 15 years apart showed the same areas of concern and no reduction. It was a huge honour, and incredibly exciting to speak at the launch of Saving Babies Lives in 2016 – when for the first time professionals were willing to make change.
Every time I see these comments my stomach tenses, I feel sick, I get tearful, I can’t breathe. I have come to realise that these posts are triggering.
Maybe the PTSD wasn’t completely treated, there is another layer. Because when I read stuff like “they should say the stillbirth rate might double after 42 weeks, but that this is still a very small percentage”, my heart is just screaming at the screen.
I was one of that small percentage. I was one of that small percentage in 2009 that meant that 4000 families were destroyed.
And for many years after 2009, that small percentage stayed the same. NOONE CARED ENOUGH TO SAVE THE BABIES. It might be a small percentage but it is a huge number.
I have given up speaking my story, sharing my feelings, because it just becomes “us & them”. There is no way to protect my heart in the discussions. There is no way for the words on the screen to not be personal.
It is personal. It is my life.
I cannot rationalise the unrationaliseable. There are no magic words I can say to myself, that will make me see the bigger picture and not the 1. I cannot unsee the 1 family who is ripped apart.
I cannot sit above my story, my child, my family and unsee what Finley’s preventable death did to us. I cannot sit in those groups and watch as people reduce my son, and my family’s experience to a small and acceptable %.
I cannot not be hurt when the trauma I lived through is
written off because less people experience that, than the amount of people who appear
to find their birth traumatic despite having a living baby.
I HAD A TRAUMATIC BIRTH TOO. I have scars too. I had poor decision making too.
I had my choices not explained properly to me too. I have vivid memories of
moments of my birth too. AND my baby died.
God I hate reading these words. I hate writing these words. I hate myself for feeling like this. (yes I know it is transient, yes I know I am probably in complex and unresolved grief. Yes I know the ptsd is multi-layered. Yes I know I will be fine).
It will NEVER be ok that my baby died.
It will NEVER be ok that there were signs of his impending doom which were missed and when spotted were not taken seriously.
It will NEVER be ok that different actions at any one of 4 or 5 different points would have meant my baby lived.
It will NEVER be ok that if Finley had been born in 2017 instead of 2009 he would most likely have survived.
And reading conversations taking place that seek to undo the amazing reduction in stillbirth rates that occurred 8 years after his death is not currently ok.
Maybe in time I will be able to rejoin them. But right now my heart needs to stop being hit by words on a screen.
Words that threaten to shatter the heart that I have carefully rebuilt piece by piece.
A heart that is now, 10 years on, still feeling the disbelief, anger and pain of what forever without my baby feels like.