Five years ago, on 26th February 2018, my first book was published. As a lifelong habitual writer, this was never something I intended to do. I never considered publishing a book and never imagined putting something so private out into the public for anyone to consume. So, why, then?
Well, motherhood made me feel responsible for sharing my honest account with other folks who may need that. The isolation of having a baby in intensive care, whose survival was uncertain hour by hour, is palpable.
Sure, there were folks you could talk to, but many well-meaning would stick a knife into your belly to say ‘the right thing’. Sometimes there was nothing to be said. The best support came from those going through it themselves, who were right there in the thick of it—the most harrowing ‘rollercoaster’ where survival is not guaranteed—nothing is.
This book needs a revisit from my side. I admit that it editorially falls significantly short. Much professional experience has been gained in the five years since publication. I came from the experience scathed, and the initial years following discharge from the unit were complex—PTSD didn’t hit immediately, but it did hit hard. I can’t go back there yet. One day I will. So for those who pick it up, be gentle—this was my first, and the experience eviscerated me.
I now try to let such days pass by. There’s a day for everything, isn’t there? It’s impossible to acknowledge them all, thoughtfully, every year.
This year though, I’m dipping my toes in to share a little on the messy, sticky web.
For the lifetime of my first premature baby, I have struggled to acknowledge Prematurity Awareness without also acknowledging baby (and infant) loss.
I lost two before my two survivors.
Every birth affected me profoundly. Even the first, which I readily admit was a pregnancy I didn’t want. Yes. I admit that. I wasn’t ready to be a mother. I wasn’t in a supportive relationship. I was in an awful state of depression. Even with that, I still grieve for the life that formed inside my womb, those rapidly multiplying cells that suddenly stopped. I remember the pains ripping through my abdomen. I recall the loss as intimately as the babies I actively (desperately) tried to conceive years later.
The second pregnancy (baby) was very much wanted; every moment her heart beat, and every moment after — when it fell silent — is preciously held in my soul. My womb remembers her place there. Those horrendous words at the ultrasound, “I’m sorry, there’s no heartbeat,” still haunt me. Days of her silence within my body, knowing she was dead and willing her heart to (miraculously) start beating again, wishing for a mistake, they missed her fluttering. There was no mistake — her labour and birth in that silent hospital room and everything after is etched in my bones. The love is agony.
I didn’t trust my body. I felt betrayed by the perceived failure to protect and nurture the life within it.
My third pregnancy was riddled with anxiety. Words are frivolous when even professionals can’t give the answers. There’s no reassurance anyone can offer, just a wish for their life. Their existence. Hope through the torment and desperation.
My third child was born alive just 25 weeks into the pregnancy. The Neonatal Intensive Care journey that followed was another world entirely as was finally bringing her home. Writing about those initial four months was cathartic and not something I really planned on doing — it just happened and became something that I hoped may help other families thrown into that world feel a little less alone. It can be a deeply isolating experience — having a very premature / sick child — and the ongoing battles, fighting their corner and protecting them, making arduous decisions. All this carries on after they’ve been discharged from the unit — at least those fortunate enough to survive.
My last pregnancy ended when my baby was born at 28 weeks gestation. That Neonatal Intensive Care Journey was another experience altogether. Medically it was smoother, and the surroundings, staff, routines and procedures were familiar, comforting (in ways). It was no less difficult — additionally so with another young child to care for — a toddler who was still at risk of things such as RSV, and this birth like the one before was also bang-smack in the middle of winter. My soul was ripped down the middle — and I mean utterly eviscerated. I was a walking, talking, gaping wound that appeared on autopilot. And I don’t think there’s a way for those cracks ever to be restored.
I’ve accepted it all, each of those journeys, the losses, the trauma and the toll it took on our family.
I have let go of the crippling guilt of events I had no control over — advice for life. Learn and let them go.
So, November 17th is World Prematurity Awareness Day. It means something a little different to those who are aware through their own experiences.
I published my first book on my first prematurity survivor’s NICU journey. Having my children gave me more than I can ever put into words. They are my reason to not wilt quietly in a corner, my reason to speak up. They are my inspiration, my pain. They taught me a love that I never knew and so much more. They are my reason to keep going and try to set a positive example of self-worth even when I feel entirely worthless. My children are worth so much more. (All our children are.) They continue to do this every single minute of each day because they exist — against the odds (which were very beak at points).
I’m not going to spiral into talking about the impacts of the pandemic on all of this. It’s hard to refrain because it has had an impact. And knowing how tough those journeys in NICU were for families prior to all of this, let alone now. For those (medical staff and preemie families) having to manage those additional risks and contend with vaccine refusers and conspiracy theorists….
Anyway, it matters. Our actions have consequences that we cannot imagine.
I’m babbling now and trying to stem the flow so, here I sign off my (public) acknowledgement of World Prematurity Day 17/11/2021.💜