I first came into contact with Spoons in 2018 when my little boy Leo was born at 29 weeks at Oldham Hospital. As a first time mum it was a really scary experience, everything was so unknown and the whole NICU journey left me feeling stressed and anxious. I was told about Spoons by one of the nurses and received a welcome pack with little keepsakes and helpful information. I quickly joined the Facebook group and found a sense of relief and comfort knowing that there was a whole community of people I could turn to that had been in the same position.
A short while later I had my little girl Amelie at 32 weeks and found myself needing support all over again.
I knew Spoons would be the group I would turn to, to ask questions and to share my feelings, knowing they would be understood and validated. Spoons has been a guiding light for me. They’ve shown me so much support and compassion.
Having my children early was such a trauma but I had no idea it was setting me on a path that would lead to so much joy and fulfilment. I’ve been given the opportunity to share my experience with likeminded people, to explore those feelings and to process this key event in my life. And even now within my role, I continue to form connections with people and to learn something new each day about the trials and tribulations of life in and after neonatal care and the remarkable strength of the people experiencing it. I owe a lot to Spoons, both personally and professionally; for taking care of me and my family in those early days, for allowing me the opportunity to support other families, and for encouraging my own self growth, as a mother, and just as me.
When I think about the challenges facing families experiencing neonatal care, there are just too many to name. Having a neonatal experience isn’t as clear cut as having a poorly baby, it’s so complex.
There may be challenges with bonding due to the separation and disconnection, and a grief that comes with no longer being pregnant. It can take a toll on your mental health which can be hard for people to understand if they haven’t been through it. That in itself is isolating. We also had the challenge of having a toddler at home whilst having a baby on NICU, and we were racked with guilt that we had to leave one or the other. Many families also have the challenge of transferring hospitals which is very scary, as well as being difficult to get used to when different hospitals have different rules.
Another challenge I hear of often is the issue with time off. Many employers still have little understanding of the impact a neonatal experience can have on a person, Dads often go back to work after little to no time off and the whole family is put under pressure with time constraints and financial worries. It’s the last thing you want to worry about when your baby is poorly.
If I could offer families any advice, I would tell them to reach out for support. I wish I had sooner. For a long time I only accessed the online support from Spoons as I was too anxious to talk to someone. But when I finally did it was a weight off my shoulders.
There is such a sense of relief when you talk to someone who gets it, someone who truly understands what it’s like to have a baby on a neonatal unit and the challenges you may face in the months after.
Whenever I speak with neonatal families now I feel there is this immediate, unspoken connection that makes you feel like you’re not alone. And I hope that more families find the strength to reach out and find the support they need.
I love being part of the Spoons team because I love meeting new people and hearing their stories. Every neonatal journey is unique and I always learn something new. It helps me to gain knowledge of things I may not have experienced in my own journey and gives me the chance to develop that into our support services. I’m also so grateful for the support I receive from my colleagues and the organisation as a whole, with my own mental health and wellbeing, balancing work life with home life, and all the amazing training opportunities I’ve been given.