World Prematurity Day: reflections on our Spoons journey

This World Prematurity Day, Kirsten Mitchell, our Founder and Operations Manager, reflects on her own experience of neonatal care and the journey she’s been on since setting up Spoons Neonatal Family Support in 2015…

“In a recent conversation about the upcoming World Prematurity Day, I noted that this will be the 10th World Prematurity Day I have taken part in. I have no idea where those 10 years have gone, but this realisation led me to reflect on how far Spoons has come since I first became aware of World Prematurity Day back in 2014.

In early 2014 I experienced the challenges of premature birth when my baby boy was born 24 weeks into my pregnancy. As well as being a massive shock for me and my husband it also thrust us into the traumatic, chaotic and overwhelming world of neonatal intensive care.

Being a typical 24 weeker and also a boy (sorry to all males) he made sure we experienced the cliche “NICU Rollercoaster”. Everyone says that term and everyone dislikes it, including me, but it really does sum up the unpredictability of neonatal care and all that comes with it.

We had a bumpy ride through neonatal care to say the least and I will never forget the darkness that I felt in those months on the neonatal unit and the months that followed. But we gained a lot through that journey.

First and foremost we are very lucky to have gained a wonderfully spirited and very cheeky 9 year old who bears no resemblance to that 670g little boy born nearly 10 years ago. We gained friends for life. Friends who we met on the neonatal unit and who helped us through our journey, filling our days with hope and the dark humour that only NICU parents get. And I like to think we did the same for them.

We also gained a unique insight into what it is like to feel hopeless, desperate and completely alone, even when you are surrounded by people. In the days and weeks that followed us leaving the neonatal intensive care unit with our baby, I knew I had to do something positive on the back of our traumatic experiences. I knew that making friends and connections with other NICU parents was key in navigating the neonatal journey and life that came afterwards. What I didn’t know was that what we were about to do would impact on the lives of so many families who went through neonatal care.

What started in 2015 as a Facebook group for families who had been on the neonatal unit at one hospital in Manchester, has now become a thriving community of neonatal families from across Greater Manchester. Families who support each other through the hardest of times. We now have over 1,500 parents in our online group who look out for each other, encourage each other and hold each other up when things are tough. We now offer a range of services to support families that we could have only have dreamed of back in 2015.

It all began with three friends who wanted to help other families, and Spoons is now a small but very busy charity helping over 350 families a year. There was never a plan for Spoons to expand in the way that it has, it has all grown very organically. Those involved in the start of Spoons saw a gap in support for families who have been through neonatal care and wanted to fill it.

The more parents we supported through their neonatal journey, the more parents wanted to get involved to help families later on in their own journey. In the first few years Spoons was led solely by volunteers who had their own lived experience of neonatal care. Some volunteered as peer supporters, having their own unique perspective about neonatal care they were able to support other families through the toughest of times. Some volunteered as trustees, using their professional skills and experiences to ensure the charity was financially stable and that governance was in place to keep everyone involved safe.

Some volunteers helped at our community coffee mornings, giving up their own time to ensure that parents had a safe space to meet either families. Making sure everyone always had a full cup of tea or coffee and a slice of toast in their hand. No one ever felt alone at our community groups. We are grateful to every single one of our volunteers past and present, Spoons would not be where it is today without their passion, commitment and kindness.

Now as I look at what Spoons offers to families today, I can’t help but feel proud. We offer vital services to families who have experienced neonatal care, services that didn’t exist in Greater Manchester 10 years ago. Sadly, with the pressures facing our health services now,  I think we are needed more than ever before. It’s important that we highlight that we are here for all families experiencing neonatal care, not just those of premature babies.

Of course there is always more that we would like to do, and there is always more that our families need from us. We’re navigating a cost of living crisis and working so hard to ensure we can keep our services available to families. It isn’t easy, but with the support of our volunteers, staff and families we have managed to keep going.

I never expected my experience of premature birth would change the lives of so many other families. Not just the lives of those who have experienced premature birth but so many lives of those who have experienced neonatal care.

I feel so privileged to have been a part of so many neonatal journeys and so grateful to every single family I have met who has played a part in my own family’s journey. Both on the neonatal unit and through our Spoons journey.”

To speak to one of our team, enquire about volunteering or to make a donation, please get in touch – we would love to hear from you.