"It is essential that mothers find a community of lived experience".
At the start of December 2019, I gave birth to my second son at 38 weeks gestation. His birth was quick, and he had an uncomplicated delivery. However, a few hours after birth he was admitted to the neonatal ward with low blood sugar and was also found to be hypotonic. He had a notable head lag and was whisked away from me and spent two weeks on the NICU, whilst waiting for genetic investigations, blood work and observations.
This was totally unexpected, and I found it incredibly challenging to adjust to the idea that our son was potentially born with a medical or developmental need. I was very frightened about what our future may look like, especially if any of his results returned positive for some of the suspected diseases or syndromes he was investigated for. Unfortunately, the nature of professionals is always to inform you of the worst-case scenarios, all of which can be hard to comprehend.
I was incredibly lucky to be supported by a fantastic perinatal mental health team and my husband was able to reach out to Bliss and our local IAPT service for email support. Although the care my son received was amazing, the support for mothers experiencing the NICU and the world of follow up appointments and community therapies was not so readily available. After his discharge I actively sought out mothers who had experienced the neonatal unit.
Through a special needs mother and baby group, I have met some wonderful mothers who have shown me the power of a mother’s strength, resilience and the importance of a network of support on my journey. It is essential that mothers who have experienced a premature birth or a birthed a baby with a medical need find a community of lived experience. My experiences with my son have transformed my life and outlook on my personal and professional world, I no longer take anything for granted and I am making changes in my life to ensure that I am surrounded by positivity; and able to support other mothers in need. Whilst on maternity leave, I embarked on a baby massage and yoga course, as I knew the benefits of this for mothers and babies bonding and newborn development; through this network I met Vicky.
Vicky has birthed two boys who were premature and therefore, like me, experienced the NICU. We decided to create a forum for mothers who had experienced the NICU with the aim of creating a collective of poetry, stories and words to form a book about the experiences and emotions felt whilst our babies were in the NICU or SCBU.
We have created a network of over 90 mothers on, within the group mothers share their stories and it is a safe space to communicate with others who have similar experiences. Together we have created a book called, 'Miracles and Shining Stars', in aid of Bliss UK and Sands UK and it includes works from over 50 authors, including mothers, extended families, neonatal nurses and consultants. It is a powerful collection of unique, courageous, heart wrenching and hopeful- poems of love.
The book is a collaboration of mothers and families who have birthed babies with medical conditions, genetic conditions, suffered a brain injury at birth or during pregnancy or were born prematurely. It also includes words from mothers and families who have suffered baby loss.
One of the amazing things to come out of this project is the feedback from the women who have contributed. Vicky and I have been overwhelmed with the messages of support from mothers who wished a book like ours was available for them to read when they were in experiencing the NICU. The number of women who have reached out to us to say that they are so thankful for the opportunity to share and gain some closure on their experiences through this project. Mothers who had not written for years have expressed how they have found the experience cathartic and that they will now continue to write. Some mothers who initially found the writing difficult ended up submitting more than one piece for the book. Journaling and creative writing is proven to have therapeutic effects on mothers who are experiencing or experienced adversity.
We are so proud that this project has enable so many contributors to feel that their experiences were valued in the knowledge that they can bring support to others. The book is a demonstration of how the power of connection, creativity and commonality can bring comfort, support and raise awareness.
I know that if this book or similar was available whilst I was experiencing the neonatal unit, or during the early months home together with my newborn, I would have found comfort in reading it.
I hope this book brings comfort and hope to many mothers and families. I am so grateful to all who have donated generously to the production of the project; all royalties will also be donated from any future purchases.
‘Miracles and Shining Stars’ Voices from the Neonatal Ward by Charlotte Burkett and Vicky Mather-Willis is available to purchase from Amazon as an e-book and paperback.