The Northern One and I take it in turns most nights to read Squidge a bedtime story. For a little boy who’s only just one he has a huge number of books which are spilling out of his own special bookcase and onto our shelves where the grown up books live.
When he was really tiny, before I’d properly discovered how to play with him and entertain him I would spend hours reading to him. I’d kept books from my own childhood that I remembered my parents reading to me, taking them with me when I left home and each time I moved house so that one day I could read them to my own baby.
When Squidge was admitted to hospital as a tiny baby (both times) I remember running around the house packing overnight bags for us both and sobbing to the Northern One that I needed to pack a story book for him. In the early hours of the following morning I lay on the bed on the Children’s Ward, Squidge snuggled up on my chest, reading ‘Plop the Baby Barn Owl’ to him.
There is a book that, whenever Squidge pulls it out of his bookcase and brings it over for me to read, reminds me of another little boy and another mummy reading a story. Like Squidge, this little boy had almost black hair that all stood on end and big, dark eyes. There’s a photograph on my living room wall of Squidge at two days old and I can see the similarities in their appearance every time I look at it.
But unlike Squidge, this little boy was dying.
We had been batting to save him since the day he was born; weeks and weeks of ventilation, monitoring, medications, blood tests and surgery but in the last couple of days we’d been forced to accept that this was a fight that we could not win. We’d broken the news to the parents as gently as we could; telling them that if he showed no signs of improvement by the end of the week then the kindest thing to do would be to withdraw treatment and allow him to die.
One look at this little boy and it was heart breakingly clear incredibly sick little boy; obvious to his parents and to us that he didn’t have long left.
The fluid escaping from the little boy’s circulation; it’s vessels made porous by infection had caused him to swell, almost beyond recognition. His skin was tight and yellow and his ears swollen to four times their original size.
Almost since the day he’d arrived on the unit there had been a book in the storage compartment in the little boy’s incubator, maybe put there by his parents in the hope that one day he would be well enough for a story. But even after the parents had been told that there was nothing more we could do, the book remained in the drawer under the incubator. In the midst of all the struggle and grief it was clearly important to his parents to be able to read him his first story.
They could have sat beside his incubator, opening the portholes so that they could touch him and he could hear their voices but it’s not the same as being able to snuggle your little one on your lap and show them the pictures as you turn the pages.
I really wanted these parents to have this opportunity.
It took four nurses to safely get the little boy out of the incubator and onto a pillow resting on his mum’s lap without distressing or frightening him.
Disconnecting the ventilator and giving breaths manually while we lifted him out of the incubator. We had to be so careful not to dislodge his breathing tube; the main thing keeping him alive.
Untangling all the tubes and wires and securely fastening them to the pillow, making sure that he wasn’t lying on any of them which would damage his fragile skin and cause him pain.
Snuggling him under brightly coloured knitted blankets, making sure every part of him was tucked in so that he was warm and comfortable.
The whole process took about ten minutes but once we were confident that he was settled and that mum and dad were also happy and comfortable, the three nurses that helped me went back to their own patients and I stepped back to give mum, dad and their little boy some space.
From the other side of the room I kept an eye on the monitor, watching for any signs that the little boy was becoming distressed; staying within sight in case mum or dad needed me for anything. I didn’t want to intrude on their private family time but equally I didn’t want them to feel as though I’d abandoned them.
Out of the corner of my eye I could see mum open the book and start reading to her son, pausing every so often to gaze at his tiny face. I wasn’t close enough to hear what she was saying but I could hear her soft, murmuring tone and see her pointing to the pictures, describing rabbits and woodland and flowers.
Anyone who didn’t know them or who wasn’t close enough to see how desperately ill the little boy was could almost believe that she was just another mum reading a bedtime story to her baby before she settled him for the night, so absorbed was she in the book.
It was such a simple thing, being able to read your child a story; something many parents (myself included) take for granted but for these parents it was a memory that would need to last a lifetime. One of the most important parts of being a NICU nurse is ensuring that memories can be made whenever possible; remembering that for some parents there will be far too few moments like this for them to recall in the months and years to come.
They didn’t have much time together as a family, these parents and their son and the time that they did have together had been solely in a place of noise and bright lights; full of uncertainty, pain and loss. But as a unit we did everything we could to help them make the most of that time, facilitating cuddles whenever possible and helping them to feel like parents, including reading that very special first story to their little boy.
A few days later the little boy died, snuggled in his parents arms and I shed some tears when I realised that the precious first story his mum had read was also probably the last.
I still think about that family often; quietly keeping the memory of their son alive even though they’ll never know.
Remembering that little boy every time Squidge brings me that one book and remembering to be truly grateful that I have my little boy to snuggle in my arms and read to every night.