The Bane Of My Life
My son, Matthew, was born three months early and spent the first six months of his life at St Michael's Hospital in Bristol, England, which specialises in caring for premature and critically-ill newborns.
This book is a transcript of a diary I kept at that time, which records the emotional rollercoaster we endured during his fight for survival. I have published it in order to give other parents of premature babies an idea of what to expect, and to hopefully inspire them to find the strength to believe, even in dark times, that where there's life, there's hope because sometimes, miracles really do happen.
All profits from the sales of this book - both paperback and digital versions - will be donated to the Cots for Tots charity, which supports the Neonatal Intensive Care Unit at St Michael's Hospital, Bristol.
The story behind the story
We present 'Doctor Doom' with a copy of The Bane of My Life during a return to NICU in April 2018.
The story behind this story is quite simple; my son was born at 26 weeks, and spent the first six months of his life in hospital, forcing my wife and I to endure an emotional rollercoaster. During that period, one of my coping mechanisms was to keep a diary, in the hope that, by writing things down, I might be able to get them out of my mind a little, and actually try to get some sleep.
So, why publish it at all, and why publish it when I did?
The when is probably the easier question to answer. In 2018, we reached another milestone in our journey with Matthew, as celebrated his 10th birthday.
The why publish at all takes just a little more explaining. In the very early days of Matt's life, crumbs of comfort were few and far between. One source was the corridor of the ward we were in. The walls were lined with photo frames of babies which had been born prematurely and had made it home. My initial thought was that, one day, there would be a frame on that wall with a photo of Matt in.
As time passed, and we prepared to leave hospital, I decided not to do the photoframe, but something different. Using some software on a website run by a long-gone High Street photography shop, I created a "photobook" outlining Matt's progress, and written as if by him. When we left the ward, we presented a copy of this book to them.
Two years later, we returned for Matt to be formally discharged, and I was told that my book was still there, and that, only the previous day, the father of a poorly child who was underoing surgery had read it, and taken some comfort from it. Even back then, people said I should look into publishing it 'properly'.
In time, I finally got into self-publishing, via Lulu.com, which meant I could hold in my hand a paperback book written by me but without breaking the bank. I thought then about reproducing my photobook, but learned it would cost purchasers between £30 and £40 a copy. Far too much. So I thought about my diary instead.
But would this be too personal? Too dark and depressing? For a long time, I thought so. But it kept nagging away at the back of my mind. And then, in 2017, I turned to Facebook to ask if there would be interest in it. I was somewhat surprised by the volume of responses, the vast majority of which was "yes". Most notably was support from some of the medical staff who had been there right at the start of our story.
And so, my diary is out there, and is priced in such a way that I am able to donate £1 from every copy sold to the Cots for Tots charity (making no profit at all. The remainder of the cover prices cover what has to be paid for through self-publishing, in terms of printing and distribution costs. ALL of my proceeds from any sales of this book go to Cots for Tots.
Reviews & Feedback
A warm, heartfelt, recollection
A must-read for everybody involved in Neonatal Services, beautifully written. Parents of pre-term or sick newborns will find this account stimulating and thought-provoking, enabling the realisation that they are not alone in their journey. The importance of effective communications is highlighted and could be a valuable teaching tool for all staff as well as highlighting the stresses of being a parent or staff member in this field. Thoroughly enjoyed reading this and would recommend to everybody; certainly highlights a service that is not fully understood and recognised by many.
Shazza, Amazon.co.uk, 2 March 2018
The NICU journey - a personal account
A hugely heart-felt read about the trials and tribulations of having an extreme preterm baby whilst still functioning day to day. Parents will empathize with Darren and Debs, with the highs and lows, and the emotional balance between home and hospital. Nursing and medical staff will appreciate the opportunity to reflect on how things are said and done, and how parents are so influenced by the words and actions of staff. A great, insightful, read. Thank you, Darren, for writing this very personal journey.
Mrs Kathy Eastwood, Amazon.co.uk, 3 March 2018
Very moving and emotional book. As Darren describes the rollercoaster ride of Matthew's first six months, the reader joins him but with the advantage of knowing that it has a happy ending, and Matthew is nearly 10. Lots of tears, but also joy.
SRC, Amazon.co.uk, 12 March 2018
A well-written, honest and open account of the rollercoaster ride of emotions experienced by a dad who's (sic) son was born 3 months premature. I got so engrossed in Matthew's journey that I couldn't put the book down, even though I was moved to tears on several occasions. All profits of the book will go to Cots for Tots, so it was a pleasure to buy this book and help a very worthy charity. Brilliant read.
Kelly Vincent, Amazon.co.uk, 14 March 2018
This is a wonderful account of the experience parents have while dealing with extreme stress and the unknown journey they find themselves on in NICU. Having worked in NICU for many years, and been part of this journey, it is humbling to read the account of a father who was so involved in all aspects of his child's care and life, albeit starting so early. This book will bring comfort and clarity to so many parents and NICU staff alike, as we sometimes get caught up in the day-to-day and not look outside at how we are all perceived by others. Amazing work.
Claire Elizabeth Scott, www.lulu.com, 15 March 2018
Wish I could give it a 10 as this book is so amazing, it's hard to put it into words. So well written, you feel you are on the emotional rollercoaster with them. It made me cry from the beginning and the photos are so cute. I would recommend this book to anyone who wants a really good read. Darren, you have outdone yourself, congratulations.
Mandy Vennall, Amazon.co.uk, 16 March 2018
Beautifully written, real and inspiring
Beautifully written, real and inspiring, wonderful ending. Recommended read, whether you are a parent going through a similar journey or not. Five stars, a page-turner, and a reminder to find the positive in every day.
U Know Who, Amazon.co.uk, 19 March 2018
A very honest read
As a Mother to two premmies, this book describes perfectly the rollercoaster ride you have during your child's stay in special care. It was definitely therapy for me to read someone else's emotions/struggles that only another parent of a prem baby would understand. I only wish now I'd kept a more detailed diary. Well done, Darren.
JoJo, Amazon.co.uk, 2 June 2018
Facebook comments/personal messages sent to the author
Brilliant! Very thought provoking from a nursing point of view and a management point of view. Very hard to read from a parents' point of view. No one should have to go through it all. I'm so glad you have published it.
IM, March 2018
What an amazing insight into how parents feel while they are on the NICU ride. It was an honour to have looked after Matthew and to have been a part of the journey. Your book will bring hope to others and definitely help medical professionals who work in NICU realise the ever-lasting impression they leave on people's lives and memories. The team at St Michael's Hill are wonderful. Thank you for what you have achieved with your book. It made me laugh and also cry. It crystallises why I do my job.
CS, March 2018
Hello Darren. You don't know me and hope you don't mind me messaging you but I felt compelled to. I'm half-way through reading your book. I purchased it simply because of the proceeds going towards St Michaels. My son was transferred there August 2012 and they undoubtedly saved his life. And ours. I've asked a few close friends and family to read your book also, just to get an insight of what we went through, although I don't think anybody other than another premmie parent reallly knows. Thank you for writing such a fabulous book.
JW, April 2018
Comment posted on the Facebook page of Bliss, an organisation concerned with premature and ill children.
Darren Bane, I wanted to say thank you for writing your book. We were in Bristol too (and the Chaplain you praised was a rock for us, too). While I was there with my very poorly, full-term son, I almost felt jealous of the premature babies. I couldn't tell you why, now, but it felt real at the time. Your book made me realise what a tough, albeit very different, journey you had. It was a fantastic read. Thank you.
Charlie Wilson, 16 April 2019