On this World Prematurity Day, my premature baby, born 10 weeks early at the start of the very first COVID lockdown, will be in Reception Class 2. He’ll be learning this week’s phonics sounds, hoping it’s fish fingers for lunch and deciding which of his masterpieces will make it into his tray ready to be transported home at the end of the day. He will bounce out of after-school club, alongside his older brother, telling me he has mislaid yet another jumper and will have no idea of the significance of the day. He’s four – why would he?
They say the days are long, but the years are short when it comes to children, and I understand why they say that, but, for families like us, those that have experienced neonatal care, a lot has happened in those four short years. The type of ‘stuff’ that fundamentally changes you.
Elliot’s birth was incredibly traumatic with risk to life for both him and I. The exhausting physical experience of that alone would be enough to warrant a PTSD diagnosis, but then comes the pain that only such uncertainty can bring – will my child survive?
People often say to me that my trauma must be compounded because it was so early on in COVID – when nobody had any answers and the virus was, for so many, a death sentence. Surely the fear of your tiny, 2lb baby contracting that while on a neonatal unit, covered in wires and tubes, is at the root of your trauma? That, for the 8-weeks he was on the neonatal intensive care unit, it was one parent per baby, meaning the first time you and your husband met him together (apart from immediately after his birth when he was thrust straight into an incubator and wheeled away) was the day you brought him home?
Perhaps, but when I speak to neonatal parents, who had their children before the pandemic, there are common points of trauma that are nothing to do with COVID – watching invasive medical procedures and, possibly life-threatening events (not just for your baby but others on the unit), having to quickly get to grips with blunt medical terminology, the gut-wrenching feeling of leaving your baby every night, the guilt when you’re with them on the unit of not being with your other children (if you have them) and not to mention the well-meaning but oh so painful questions from friends and relatives about when they’ll come home, when you don’t even know if they’re going to make it through the next few hours.
I am over four years on from being sat in one of those padded, blue plastic hospital chairs, waiting, waiting and hoping. When I was sobbing on the inside but not on the out, for fear that someone might think I wasn’t coping. Four years and I can put myself back there in less than a heartbeat.
And that is where Spoons comes in. After, despite my internal-only sobs, a nurse recognised the signs, jotted down Spoons’ contact details on and passed it to my husband to see if I’d consider reaching out for some support. I was furious when John handed that paper over. Furious but mostly terrified – if they didn’t think I was coping, if the time ever came, would they let me take Elliot home?
I still have that scrap of paper with Spoons’ contact details on in my dressing table drawer. It reminds me of where I was, where to go for help and how far we and I have come. I reached out after reading on the charity’s online parent support group a comment from a mum who had spent her son’s fifth birthday crying in the toilet as the trauma overtook her while the rest of her family sang ‘Happy Birthday’ in the next room. I didn’t want that for Elliot or I and so I asked Spoons for help.
And I got it, ten-fold. I received intensive trauma counselling, which I have been able to return to, when needed, over the past four years. Without this I am honestly not sure where I would be. I also became part of a community of families who just get it. Those who understand why, four years on, I remain in full disaster planning mode and find it hard to switch off the hypervigilance that it takes to parent a neonate baby.
It is the understanding of the Spoons community that made me become a trustee of the charity, alongside the desire to simply give back to an organisation that scooped my family and I up when we needed it most.
I believe those who support neonatal families need to have lived experience to be able to remind those experiencing it in the here and now of their strength and resilience.
If there was one thing I would like people to know this World Prematurity Day, it is that premature birth happens to 1 in 13 babies in the UK (and that 1 in 7 babies born, premature or not, will need neonatal care; Spoons helps those families too!) It’s really not rare and the chances are someone you know, someone you work with or someone you love will experience it – so, just being aware that Spoons exists and being able to signpost someone to us is massive. And, if you’ve got a few pounds to spare, please do donate to a charity that has a lifelong relationship with its service users. Thank you.
Support Spoons by making a donation here.
