What Prematurity means to me this World Prematurity Day

Today is World Prematurity Day; the day that the reality of prematurity may just enter into the consciousness of those who haven’t been affected by the harsh realities of prematurity. Approximately 60,000 babies are born prematurely in the UK every year – roughly 1 in 11 of births. Around the country, supporters of our little fighters will be taking part in Little Lights Walks to raise awareness and crucial funds for Bliss. Last year I was one of those supporters and even made it into our local paper. This year I’m a busy mum working full-time so I’ll be flying the flag for World Prematurity Day through social media – and I’m delighted to learn that Pampers is again supporting our babies and our NICUs through a generous fundraising campaign. Joining in on a Bliss campaign, Pampers will donate £1 to Bliss for every post shared today on social media with the hashtag #PrematurityIs and by also tagging Pampers_UK on Twitter.

So what is the reality of prematurity? The answer will of course differ for every parent. But I’d like to reflect on my perceptions of prematurity this World Prematurity Day:

#PrematurityIs losing your parental control. You don’t get to choose when you hold your baby – you’re lucky if you get to hold your baby on the same day that they’re born. Planned to have that uninterrupted ‘golden hour’ after the birth? Skin to skin and immediate breastfeeding? No chance. Your baby is whisked off to NICU before you can even get a glimpse of your newborn’s face. And when you FINALLY get to hold your baby, you’ll be sharing your moment with someone else. A nurse or two will be helping you get accustomed to all those wires. Maybe your NICU neighbour will be having a peek across the ward. No control, no choice.

#PrematurityIs the most unbearable loneliness. You’re alone on the postnatal ward, listening to the cries of healthy term babies. The catering staff pity you when they spot the empty space where the cot should be alongside your bed. The day arrives when you’re discharged from hospital and your heart breaks. I still feel teary thinking of that long walk to the car, sitting in the front seat surrounded by ‘Baby Boy’ balloons and crying uncontrollably. Although my baby had never been in our home, it felt empty. I started to build a photo wall in L’s bedroom so I could feel close to him when I expressed milk in the middle of the night. 18 months on, the photo wall remains as a tribute to his NICU journey.

#PrematurityIs nothing targeted at newborn babies being suitable for your newborn. Despite the fact that your baby has been newly born, they won’t reach the milestones and sizes labelled with their status for many weeks or months to come. I naively asked a family member to dig out the newborn outfit I’d bought a few weeks earlier for my future baby to wear home from hospital. It was the cutest little teddy bear sleepsuit with a matching hat. Maybe the hat would fit my preemie until I could buy special clothes? No chance! Even when L came home, the outfit was still gathering dust in his drawer alongside all the other newborn clothes that swamped him. The frustration of newborn clothing being unsuitable for my newborn was short-lived once I discovered the excellent range of preemie clothes available. But it was harder to find things suited to L’s developmental progress. When his peers were starting to coo and gurgle, L was still growing in his incubator. The milestones that excited me, like L finally being allowed to have his first bath, filled me with joy. I discovered at a neonatal conference that Bliss had samples of milestone cards tailored to the moments that mean so much to the parents of preemies. I used these to decorate my photo wall but it would’ve been a great help to have used these in the ‘proper’ way in hospital; something to share on social media and document the progress that L was making in the unconventional way.  To help other premature parents celebrate their baby’s development, these milestone cards will be distributed to neonatal units across the UK by Pampers and Bliss.

#PrematurityIs being obsessed with your baby encountering germs and unwanted contact with strangers – and rightly so. Babies who leave NICU are still small and still vulnerable. A micro baby attracts all sort of attention whilst out and about. For some reason, the general public think that tiny babies are fair game for unwanted contact. So parents of preemies can’t enjoy the ‘normal’ activities until they reach the stage where they feel the barriers can slip slightly. For me, this was when L started actively putting everything in his mouth. But until that milestone, I always had an array of hand sanitisers on my person and armed my pram with a ‘no touching sign’. Despite my best efforts, L still ended up in hospital twice before his first birthday with norovirus and the dreaded bronchiolitis.

#PrematurityIs needing tailored products and equipment to make your baby comfortable. We are very fortunate in the UK that we have fantastic provision to support our preemies in NICUs across the country. They are equipped with micro versions of the medical equipment preemies rely upon; teeny eye masks to protect delicate eyes from the jaundice lamps, miniscule cuffs to record blood pressure and even little cushioned pads to hold IV lines in place. But during L’s NICU stay in 2016, the smallest nappy available (size 0) wasn’t small enough. It nearly reached his chest and looked comical.

The nurses showed me some nifty nappy origami skills to make him as comfy as possible. However, nappies which are folded to size which can affect healthy development of a baby’s hips and legs. This year, Pampers developed its smallest nappy yet for preemies weighing less than 1.8lb (800g) – meaning nappy origami can be a skill of the past! These nappies aren’t available in the stores and Pampers committed to donate around 3 million nappies to hospitals across the UK and Ireland. 59 of the 206 neonatal units in the UK and Ireland have taken advantage of the donation, which equates to supplying over 18,285 preemies with properly fitting nappies.

#PrematurityIs wanting to give something back to those who helped you and your baby through your darkest days. All the preemie parents that I know have been involved in fundraising for both their Units and Bliss through attending and organising events. Regular readers of my blog will know that I organised several fundraising parties for our NICU during my maternity leave. I raised over £1000 and I feel incredibly guilty that I can’t continue these events now that I’ve returned to work. Hopefully I’ll carve out some time in the future. But for now, I can help from behind my computer screen.  This World Prematurity Day, Pampers will be joining in on a Bliss campaign, and that for every  social post shared on 17th November which includes what #PrematurityIs to you, and tagging @Pampers_UK on Twitter, they will donate £1 to Bliss. So please share what Prematurity means to you – your thoughts and a few clicks can help support premature babies and their families!

This post has been developed in conjunction with Pampers UK to raise awareness of World Prematurity Day 2017, Pampers Preemie Protection nappies and the social media campaign #PrematurityIs for Bliss, the charity for premature babies