My little boy Tom was born at 24 weeks in 2014, he spent 127 days in neonatal care. He was very sick and had a very bumpy neonatal journey. During Tom’s early weeks on the unit I was desperate to talk to other parents who had been through what we were going through. I met lots of parents who were still on the unit, and we all supported each other, but I really wanted to talk to someone who had already been through the neonatal journey. I wanted a bit of reassurance that life might return to some form of normality. Tom came home on oxygen and spent quite a lot of time back in hospital, I found this really difficult and became anxious and felt quite isolated. I was later diagnosed with Post Traumatic Stress Disorder (PTSD) and my mental health really suffered. I was lucky enough to have a good support network who encouraged me to seek help. I also used holistic therapy which had a huge positive impact on me, with time I started to recover. Tom grew stronger and we started to enjoy him. In 2015 I set up Spoons as a private Facebook support group for the parents I had met on our NICU journey. I started to volunteer on the unit and talk to parents about my own experience and they joined the Facebook group. With the help of friends, I set up a community support group and began fundraising for the neonatal units at Royal Oldham and North Manchester hospitals. Spoons really took off - the peer support side was amazing and the feedback from parents was fantastic. Parents had a platform to keep in touch with friends they had met on the unit and speak to other parents online. The families were fantastic, and were keen to get involved with Spoons and give their own time back to help others. I have a background in support services and am passionate about improving mental health and well being. I really wanted to support parents who were facing their own challenges in neonatal care and so I took up a counselling course. We registered Spoons as a charity in 2016 and have never looked back. Spoons exists because our worlds were turned upside by having a baby in NICU, we have been able to turn our negative experience into a positive and I am very proud of this, I am proud to be part of Team Spoons.
When Hollie was born it was clear she was very poorly, she was unable to breathe on her own and the medical team suspected Trisomy 21, more commonly known as Downs Syndrome. After a tough 48 hours and little or no improvement the doctors discovered Hollie had two holes in her heart, this is known as VSD. It was also confirmed that Hollie did have Downs Syndrome, which was a huge shock to us. Our stay on NICU was just under 5 weeks and it was a tough time for us as new parents. I don’t think friends and family realised what we were going through and how much it took out of us as a family. The staff were fantastic and the support we received from other parents on the unit was priceless. We have met some fantastic families, we have shared our highs and our lows and supported each other through some rough times, we definitely made friends for life. When Kirsten said she was putting Spoons together to support parents and families on NICU, I knew I wanted to be onboard and help out. Spoons is able to offer support to families on their NICU journey through various platforms and gives families on their NICU journey access to other families who have been on a similar journey. Talking to other parents is what got us through our time on NICU journey and you can’t put a value on peer support. I work in finance and have taken the role of the treasurer on the board, I am glad I am able to use my skills and knowledge for the good of the charity. To hear and read feedback on Spoons and the impact it has on families makes me very proud and privileged to be involved.
Isabella was born at 31 weeks gestation in 2010. I'd had a fairly straight forward pregnancy until the day she was born when I suddenly went into labour and gave birth to her shortly after. I was able to see her after a couple of hours but it was 3 days before I was allowed to hold her. She looked so tiny and fragile in the incubator with so many wires and tubes I could barely see her. For the first couple of weeks I just felt numb, like this was happening to someone else, not us. It had all happened so quickly and I was in shock. I didn't feel like I'd had a baby and didn't feel like a real mum. The neonatal unit quickly became our second home and as we became more involved in her care and I began to feel more like her mum. We were able to take our girl home after 4 long weeks, weighing just 4lb 6oz. What had happened didn’t really hit me until after she came home and I felt quite isolated and 'different' to other new mums. Isabella struggled to put on weight for a long time, seemed to have a permanent chest infection for the first 2 years and had a few developmental delays. It felt like most family and friends didn’t fully understand how I was feeling. To have been able to talk to other parents who had been through a similar experience would have made all the difference to me but there was nothing like this available at that time. When Kirsten first talked to me about setting up Spoons I was keen to be involved as I wanted to help make a difference to other families going through what we had. I have been able to apply my management skills to my role as a trustee. I’m so proud to be part of Spoons and of what we have achieved so far and it’s been an honour to meet so many inspiring families along the way.
When I left school I had no idea what I wanted to be. I enrolled at a local college to learn secretarial skills and eventually landed a job as a legal secretary. After 5 years I decided that it wasn’t the career for me and that I wanted to be a Nurse. I applied to the University of Salford School of Nursing to join the child branch course and so my nursing career began. After 3 years of amazing training experiences I qualified in 1999 and was successful in an application to join the neonatal intensive care team at Hope Hospital. During my training I had no exposure to these tiny patients and was terrified of hurting them whilst delivering care. With experience and knowledge I became more confident in my abilities and realised what little fighters these special babies are. I have progressed up the career ladder from staff nurse to sister and now to practice educator on the neonatal unit at Royal Oldham Hospital. I enjoy my role, but I do miss the the hands on care of the babies and the relationship you build with the parents and wider family. In 2017 I joined Spoons as a Trustee. I was impressed with Spoons commitment to supporting family throughout the the neonatal journey, especially as I understand parents play a key role in their babies care on the neonatal unit. The success of Spoons is very much owed to the commitment and passion of volunteers and fundraisers and the strong relationship it has with the neonatal units it supports. I have the privilege of having a foot in each camp and have been able to bring my nursing experience and knowledge to the table.
Peer Support Volunteer
I first became involved with Spoons in 2015 after attending their community support group with my twins Giles and Clara. I found it a great help to speak to other parents who had been in similar situations and share our experiences. My pregnancy had been complicated from the start. As a multiple pregnancy we had an increased risk of premature birth, and on top of this, one baby wasn’t growing as expected and we had been warned to expect some health problems at birth. I thought I was well prepared for NICU. I had previously worked on the unit, so I was used to the equipment and noises, and I was well aware that the twins may be born prematurely (in fact getting to 33 weeks was an achievement). However I soon learnt that nothing can prepare you for your baby being poorly, or the rollercoaster ride that happens as a result of your baby being in NICU. During our time on NICU we received amazing support. I became a peer support volunteer on the unit as I felt I could offer the same support to other parents. As a parent of twins you encounter some unique issues whilst on NICU, for example, what happens if one baby is ready to go home before the other, which is what happened to us, and that was hard. I know it would have helped me to speak to someone who had been in the same situation.
Peer Support Volunteer
My journey started the night of 19th November 2014. I had felt drained for a few days but I thought running round after my 16 months old little boy and my 2 and a half year old daughter whilst being 6 months pregnant, it was just normal to be so tired. I had a bath that night, and it started, my waters broke and I went into labour, I was in total shock. I didn’t believe it was happening to me and I thought when I went to the hospital they would stop the labour and send me home, I did not think I would be having my baby that night, I was only 28 weeks pregnant. The next 35 hours were the longest most scariest hours. Archie Frederick made his entrance by emergency section weighing in at 2lbs 1oz. I didn’t get to see him straight away but the nurse gave me a photo they had taken of him, I didn’t want to see it and I was still in total shock. I knew nothing about the NICU world on the other side of the corridor, I had no experience of having a premature baby and I didn’t know what to except. I saw Archie briefly after about 6 hours which felt like a lifetime. Archie was in NICU for 80 days and it was tough, he was transferred to NICU at St Mary's in Manchester just 24 hours after his birth to repair his arm that had been broken during delivery, before returning to Oldham. The road was long, with lots of ups and downs but the staff on the unit supported us as a family, they will always hold a special place in my heart. I always felt when the time was right I would give back to the unit in some way. When Archie was 3 and doing well I fell upon spoons through Facebook, I got in touch and the rest is history. I am proud to be a Spoons volunteer, and proud to be able to support other families like ours.
Peer Support Volunteer
My son Joseph was born at 31 weeks in 2014. My placenta had begun to fail around 28 weeks and he was delivered by emergency C-section at 31+4 weeks gestation weighing 2Ib11oz. To say this came as a shock would be an understatement. I had the most relaxed and easy pregnancy and although I had never felt a regular pattern of movements, I was always deemed low risk. Joseph had a rocky start and had to spend some time being ventilated. When I look back now over those first few days they are such a blur. Joseph eventually turned a corner and was able to come home to me and his dad after five weeks weighing 4Ib exactly. I left the neonatal unit feeling nervous and full of worry but our tiny boy did so well. He had a few bumps along the way, which meant I had to take some extra time of work, but he amazed us getting stronger by the day. It was during this extra time off, that I began looking for support. I really wanted to meet other local mums and families of premature babies. I found Spoons and went along to one of their monthly groups. As soon as I arrived I felt instant comfort talking to other mums who had been through the same experience. I had joined their private Facebook page and loved reading others stories and parent experiences. It was so comforting to see how well and how far other premature babies had come. I began to get more involved with Spoons, and they approached me about becoming a peer support volunteer on the neonatal unit at North Manchester General Hospital, where Joseph had been cared for. I was thrilled to be asked and accepted. I was really nervous at first and being back on the unit felt so strange; the noises, the smells and the seeing the babies, but soon with lots of support from Spoons, I began to feel that I was helping other parents and talking to them also helped me. I absolutely love being part of such an amazing charity and I love working with amazing, strong families.