Rachel Collum, PAG Chair
“I joined to make a difference”
Welcome to our PAG page! We are a group of 16 mums and dads of babies who were born poorly or pre-term and who needed a stay on one (or more) of the region’s 10 neonatal units. Some of our experiences were years ago now, whilst others were far more recent but none of those days have ever left us (And have very often shaped us as the parents we are today!).
The purpose of our PAG is to represent and amplify the voices of other families like us across the region, to make sure that neonatal staff and senior teams are listening to what support we need to navigate the neonatal journey. We do this by working alongside the Care Coordinators to provide feedback and co-produce work with neonatal professionals that will have a positive impact on families both in the neonatal unit and after they transition to home.
Some examples of our recent work include developing new frameworks for delivery room cuddles; presenting at staff training sessions on the importance of Family family-integrated care and Early Maternal breast; collaborating on the creation of a new neonatal birth reflections service and conducting ’15 steps’ walks to help professionals understand what it feels like to walk onto a neonatal unit as a parent.
Everything we do is driven by our own experiences and things we identified as working well (That we’d love to see more of) or where we felt things could be improved. Every parent in our group joined because they acknowledge how traumatic any neonatal journey is and they want to find ways to buffer that journey as much as possible; to make a real difference. Family Integrated Care is at the heart of what we do and by working in partnership with professionals, we hope to set the precedent that parents are equal partners and should always be part of the conversations.
“It’s time to put him back”
I’d never even contemplated what a neonatal unit was until our little boy arrived very unexpectedly out of what had been a textbook pregnancy, when my waters broke at around 28 weeks, and he was delivered at 29+1. We were suddenly thrown from the honeymoon period of pregnancy, full of choosing cot colours and marvelling at how “small” 7lb baby outfits were, to waiting hours for our first cuddles, and then finding it was with an unrecognizable 2lb 10 creature who felt so fragile I thought he might snap.
We were in the neonatal unit for 10.5 weeks and that whole time, whenever anybody asked, I’d remark that our baby “just had to grow”. He was never seriously ill; he didn’t need any surgeries; we were never pulled into the ‘quiet room’ and the blinds pulled down. So we told ourselves to be grateful and that we were the lucky ones. But this description belittles the trauma that any NICU stay involves. The disconnect of all motherly instincts at having to leave your precious baby alone in the care of strangers every night. The wrench of having to watch them go through painful procedures which the staff consider ‘every day’ but, for a parent, are more like ‘worst day’. There is never anything ‘just’ about a NICU.
Family Integrated Care has come a long way since we were on the unit 6 years ago, and it needed to. I will never forget the number of times I had to ask ‘permission’ for a cuddle, only to be told “He’s too poorly.” And my ears were scarred by the sound of my tiny baby squealing in protest on the day when a nurse plucked him away from our kangaroo cuddles declaring “It’s time to put him back.” These violations of motherhood don’t leave a parent.
But here we are more than 6 years later with a feisty, nutty, healthy son, now a proud big brother. And of course, I will be forever grateful to the amazing teams who got us all here. But there are lasting imprints of the NICU on his personality and development, as on ours, which is why looking at the longer-term impacts of a NICU stay, for both babies and their families, is so important.
We are always keen to hear from other parents who might like to join us. If you are interested in being part of the Parent Advisory Group, please contact our Care Coordinators, Claire Campbell claire.campbell3@nhs.net and Ailie Hodgson ailie.hodgson1@nhs.net and we will contact you.
