World Prematurity Day 2015: Twinkle twinkle little star

Today on World Prematurity Day 2015, BritMums blogger Louise shares her personal story.

Last night, although I don’t know why, Squidge struggled to fall asleep.
I heard him crying and went upstairs to his bedroom to find him standing up in his cot, holding his threadbare teddy comforter, tears on his little cheeks.
He reached up to me and I picked him up, the warm, sleepy weight of him heavy in my arms as I kissed his head.
I sat in the rocking chair that we bought before he was born and held him close, gently rocking the chair backwards and forwards while he snuggled into my chest and I breathed in the wonderful, unique smell of his soft hair.
As I rocked, I sang. Softly, quietly. The same little song I’ve been singing to him almost from the day he was born.

A song that I now cannot sing without remembering the babies who share a space inside my heart along with my very own baby, although he isn’t really a baby anymore.
As I sang, tears came to my eyes and although I tried to blink them back they slowly slid down my cheeks and onto Squidge’s hair.
My voice threatened to start shaking, just as it had done on those days when I sat with families who were trying to understand how to say goodbye to their child.
I saw a desperate, broken mummy singing to her dying baby boy.
I heard the pain and grief in the voice of a dear friend as she talked about losing her son.
I felt the wracking sobs that I managed to keep inside until I got into my car at the end of a shift.
I remembered the silent tears of the consultant when we had to tell the parents that there was nothing more we could do to save their baby.
My heart ached, searching for something that I couldn’t find or even name.
Ached even though I had my baby safely in my arms.
When I first walked onto a neonatal unit as a first year nursing student I didn’t know it was possible for a baby to be so small.
So fragile.
So close to the absolute fringes of life and yet clinging on with a ferocity that I have never seen matched by another patient.
During my training I cared for many patients who had lived their lives as best they could and no longer had anything that mattered to enough to keep them fighting. There was no desperation to live, no reason to stay and so they slipped away quietly, usually during the night when all the other patients were sleeping and the minimum amount of fuss would be made.
The tiny patients I care for now are not like this.
They continue to fight even when their bodies are exhausted and they are so very tired, unable to let go but also unable to carry on living.

Since neonatal care first came to be we have made amazing advances; bolstering our arsenal of medications and treatments. We can meet even the most difficult and complicated conditions head on; all guns blazing as we battle to save each and every baby.
Yet even with such medicine at our disposal we cannot fully take over from mother nature.
We can try and provide the conditions which best allow their fragile, under developed bodies to grow.
We can take over the work of lungs that still need months to be fully formed.
We can give medications to fight infection, drugs to support hearts no bigger than your thumbnail, fluids to provide nutrition, and precious drops of breast milk.
We can place them in incubators that mimic the warm, dark safety of the wombs that they left far too early.
But sometimes, despite our best efforts, it just isn’t enough.
It means that their parents are left with an impossible, unthinkable choice.
Do they let their child fight on, knowing that they are in pain and that we cannot provide them with even the smallest sliver of hope or do they help their tiny, ferocious children to be at peace?

I have held sobbing mothers in my arms as they ask me what they should do.
I have swallowed back tears as they ask me how to say goodbye to their child.
I have felt so utterly useless when I have not been able to give them the words that the need because no one has them, least of all me.
I have thanked a God that I am not sure I believe in that I do not know what it is to lose a child.
Apart from during the height of summer, it is dark when I get home from work and when I get out of my car I stand in the quiet and look up at the stars.
Tiny, twinkling points of light in the darkness.
I look up and I remember all those babies who had to leave far too soon.
I say their names in my mind.

The stars are how I imagine the memories held by those who love them to be; tiny points of brightness in a night so dark and vast that it seems inconceivable that it could ever end.
I don’t like ‘inspirational’ quotes, especially when someone is talking about bereavement but whenever I see the stars I find myself thinking of these words.

My instinct is to rail against the unfairness of it all.
Why should some parents keep having to stare into the darkness while others live a lifetime in the sun with their happy, healthy children?

Yet I know that it is not possible for every baby to survive and that while I have seen far too many tiny lives ended far too soon, these children have lived.

They have held on, sometimes with the most tenuous of footholds, of toeholds on life so that they are able to spend precious minutes and hours and days with their families who love them so completely and who would give anything for them to be able to stay.
When they go, those who are left behind are thrown into darkness but every second they lived is another glowing speck of light that can still be seen for lifetimes after the first light went out.

Twinkle twinkle, little stars.

Post written By Louise and first published on her blog 23 Week Socks. Find Louise on Twitter.