Years ago, just as I was starting out in my career as a neonatal nurse I cared for a pair of twin girls, both of whom were very sick as they had been born extremely prematurely, right on the border between life and death.
We knew that it was unlikely that both or either of them would survive because they’d been born so early and that what we, the medical team were essentially trying to do was carry on the process of development outside of the womb.
We were trying to compensate for several months of development when they should have been nestled safely together, growing quietly, listening to mum’s heartbeat and starting to learn about the outside world from the muffled noises they could hear inside the womb.
Instead they’d been unexpectedly delivered from their little world of warmth and darkness into a world of bright lights and loud noises where they were separated from their mum and from each other.
Ventilators forcing air in and out of their tiny lungs that weren’t yet ready to breath on their own.
Lines in their tiny veins to try and provide the nutrition that should have come from the milk that they weren’t ready to drink.
Surgery on organs so small and underdeveloped that it seemed impossible that they could survive.
There’s a reason that babies are supposed to be born at 40 weeks.
We called them the ‘Gardener Girls’; these tiny little girls that were far from ready to be born.
We battled round the clock to save them and gave them every chance that we possibly could but in the end the parents were able to take only one of their daughters home.
We were all devastated.
We held the parents in our arms and we shed tears with them. We grieved for their daughter and we hoped against hope that their other little girl would survive. Every shift until the surviving twin went home the first thing I did when when I arrived at work was check to make sure that she was still on the unit.
That she was still with us.
We knew that the twin surviving would in no way replaced the lost twin but we knew that at least mum wouldn’t be sat at home in an silent, empty nursery, her arms aching for a baby to hold.
Like too many other parents that I’ve worked with.
In the days and weeks that followed the death of the little girl we worried about how the parents would cope.
Coming to the unit every day, knowing that they would only see one of their girls.
Looking at the space where their daughter’s incubator used to be and seeing another baby there instead.
Watching other babies going home and knowing that they should be leaving the unit with two babies.
And wondering if they would even be leaving with one.
We did what we could to help them to stay positive and give them hope that they would be taking one of their little girls home. Their surviving daughter was doing so well but her extreme prematurity meant that she still had some problems and set backs and you could see the fear in mum’s eyes when gave her updates that weren’t 100% positive.
I spent a lot of time talking to mum; trying to see her for a few minutes every shift that I worked, even if I wasn’t the nurse caring for her daughter.
We talked about her girls.
Both her girls.
We said her lost daughter’s name, just to hear the sound of it and there was no awkwardness or doubt, no wondering as to whether she should really talk about the daughter she’d lost or whether she should just focus on her daughter who was still living.
She’d given birth to twins; two girls who she loved with all her heart.
Why should she only talk about one of them?
Why should she have to worry about the reactions of friends or colleagues or complete strangers and whether they felt that it was ‘taboo’ to talk about a little girl who had died?
Those parents had already been through the worst that life could throw at them and had their hearts shattered into a million pieces and so if talking about their daughter and her short life bought them some comfort then we needed to make sure that they knew we would listen.
I admired the golden bracelet that mum wore; two gold charms of little girls with her daughter’s names engraved on them so that everyone who saw it would be in no doubt that she had two daughters even if they’d never met mum before.
She told me how they were finally getting round to decorating the nursery; the twins had arrived so early that they hadn’t even started decorating before they were born but that they had started buying some things.
Two of everything.
How they weren’t sure whether to keep everything or give some of it away.
That they didn’t need two of everything but that they didn’t want to get rid of things that they’d chosen so carefully for their daughter, even though she wasn’t coming home.
We talked about her personality; how she would tell us in no uncertain terms if she needed her nappy changing, she was uncomfortable or if she wanted her milk.
Such a big personality for such a tiny little girl.
We talked about how beautiful both her girls were, with their baby soft hair and their big dark eyes.
We talked about how hard their little girl had fought but how in the end she had just been too sick.
We talked about her funeral.
Mum told me about their plans to help keep her memory alive, not just for them but for everyone else who met their daughter.
They’d taken so many photographs of their girls, capturing special moments from every day no matter how fleeting they were. They’d printed off their favourite ones and had them framed and displayed all around their house so that anyone who visited would see how beautiful both of the twins were.
So many memories from such a short life.
She told me about the things they had in a memory box they’d made; her little hand and foot prints, her first hat and a teddy that had kept her company in her incubator and how they would show these things to her sister when she was old enough to understand.
We marvelled in the progress that her sister was making; how she was growing bigger and stronger every day.
How every time we managed to reduce the oxygen or increase the amount of milk we gave every feed was an achievement and even the smallest thing felt like real victories.
How she knew that her daughter was watching down on them and helping to keep her sister safe; that she would be so proud of how hard her sister was fighting to be able to go home and be with her parents.
That she would live on; through her parent’s memories and their refusal to let the world forget that they had two daughters.