Twinkle twinkle little star is one of my little boy’s favourite songs to have sung to him when he’s tired and trying to fall asleep but I haven’t been able to sing it to him this week. Every time I hear one of his toys play the tune or I hear the my husband sing it to him all I can think of is the broken, desperate mummy singing to her dying son.
I hear her voice so full of love and grief that she can barely form the words of the song.
I hear the pain, the loss, the plans for his life that will never now be realised.
She’s in a place where no one can help her or reach her and it’s just her and her little boy. She gasps and sobs that little tune over and over as she cradles her baby in her arms; desperate for him to understand that she is letting him go because he has reached the end of his fight and not because she wants to. That she doesn’t love him any less for allowing him to give up his fragile hold on life and that she would do anything rather than let him go.
He has fought so hard, this tiny boy but now he is tired, so very tired and his little body has reached it’s limit. We’ve tried everything that we can and given him the best chance possible but it’s just not enough.
It came as shock to everyone when we discovered how desperately sick he was; we knew that he wasn’t well but only that morning he’d been to theatre for surgery that could have saved him. In the early afternoon, however, the surgeon phoned from theatre to tell us that there was nothing he could do.
My heart sank when I took the phone call. I knew what the outcome was as soon as the surgeon told me that he was coming up to the unit to speak to the parents; that he needed the family room and a nurse to sit in with him. I walked back onto the unit to tell the parents that their baby was out of theatre, that he’d survived the surgery and that the surgeon was coming up to talk to them, knowing that after they’d spoken to him their lives would never be the same again.
We sat in the family room; the parents on the sofa, me beside them, the doctor and the surgeon in chairs facing the parents. I quickly look around them room to check that there is a box of tissues nearby.
The surgeon starts talking about the surgery; explaining what he did and what he found. He tries to be gentle with the parents but it’s clear that they’re not really understanding him and grasping the severity of their son’s condition. In the end he has to be blunt; telling them that he did everything he could but that their little boy is so ill there’s nothing more we can do to save him.
There’s a few seconds delay before Mum breaks down into inconsolable sobs, burying her face in her hands.
Dad sits silently and doesn’t cry; the news has taken him to a place beyond tears.
The surgeon looks defeated, the consultant looks broken; I know he has children of his own and he knows that I do as well.
I sit beside the parents after the doctors have left the room, having said that they’re sorry so many times. They understand the complete and utter futility of those words but they don’t have any others to offer and the alternative is a silence that stretches into seconds and minutes and it’s just too much for them. They may not be losing their own child but they are losing a patient that they have fought for weeks to save. Even though they have been in this situation dozens of times over the years it doesn’t get any easier for them; having to accept that the result of the limits of their skills and their knowledge is the death of a child.
I sit with mum and dad while they try and decide where to go from here. In their hearts they know what they need to do; which course of action has their baby’s best interests and heart but they just don’t know how to do it.
I try to give them the information they need and the options available as gently as possible. I want them to know that we will help them with anything that they want to do for their little boy. I don’t want them to feel as though they’re being rushed or that we’re trying to push them to make decisions. I tell them that they can take all the time they need, that I understand that there can never been enough time.
Mum looks at me; her face red and swollen with crying and asks me how you say goodbye to your child.
There is no anger or blame in her voice, no sarcasm. She knows I don’t have the answer and yet she is willing me to say something, anything that will help her to decide what to do. I quietly tell her that I just don’t know and she collapses onto my shoulder, her whole body shaking with the violence of her grief. I hold her close and stroke her hair in the same way that I would with my little boy if he was tired or had hurt himself.
As though I am her mum and she is my child.
In that moment I feel very old and although my voice is steady my tears escape and run down my cheeks.
At nursing school they told us not to cry because the grief belonged to the families and not to us.
But we do grieve; we grieve for the loss of patients that we have grown to know and to care for, their families with whom we have shared the most difficult time of their lives, for their plans and their dreams that can no longer be.
A few hours later, after their son has been baptised the parents decide that they are ready.
No, they’re not ready but they’re as ready as they’ll ever be.
Dad has cuddled his little boy and now he’s snuggled in his mummy’s arms. He rests one of his hands on the side of his face and honestly looks comfortable and peaceful. He still looks like a little boy; a very sick, very tired little boy but still a little boy.
He is still connected to the ventilator and the morphine infusion but we’ve stopped everything else, partly so that his parents can hold and cuddle him without wires and lines getting in the way but mainly because the medications and equipment that we hoped would save him are now only delaying the inevitable. The morphine keeps him free of pain and the ventilator keeps him breathing and his heart beating until mum and dad are ready to say goodbye but they can’t keep his tiny, tired little body alive.
There’s nothing that can do that now.
I kneel on the floor at mum’s side, the doctor sits on the floor in front of her and gently removes the sticky pads holding the breathing tube in place. I hold the tube so that it doesn’t slip out of the little boys lungs before we’re ready. I adjust my position so that my feet don’t go numb and mum almost screams, thinking that I might remove the tube before she’s sung to her baby.
The last thing she can do for him in his far too short life.
She takes a deep breath and starts singing and I slide the tube out of his airway and out of his mouth. I have never removed a baby’s breathing tube before but I try not to think about it because this isn’t about me but I can’t help feeling as though by removing the breathing tube I have killed him.
Mum sings the words over and over; her voice thick and cracking but she doesn’t stop even though her tears run down her face and onto her jumper.
I cry too, quietly and unobtrusively but there is no mistaking my tears. I need to be strong for these parents and their baby but I’m not made of stone and my tears speak to them of my sadness at their loss far more than any words every could.
The little boy passes quickly and quietly. His position doesn’t change, he makes no sound and the force of his illness had already turned his skin pale and given it the unmistakable pallor of death. The only indication that he is gone is the silence of his heart when the doctor listens with her stethoscope to confirm that he is at peace.
Mum sits and holds him tightly; she tells me that she doesn’t want to let him go. I reassure her that she can hold him for as long as she needs and that no one will take him until she is ready. I tell her that there will be a nurse to sit with her throughout the night and that we will not stop caring for her and for her baby just because he is no longer breathing.
The shift has ended and it’s time for me to go home. I hug the parents and say goodbye to their little boy one last time It seems such a normal thing to do; to pick up my pens and calculator, collect my coat and bag from the staff room, say goodbye to my colleagues and tell them I’ll see them tomorrow.
I sit in my car and sob, needing to let the emotions that I have managed to keep in check come flooding out in a noisy, messy torrent before I feel calm and collected enough to safely drive home. It feels like the world should have stopped but outside of that one room everything carries on turning as though no one has ever grieved the way that I know those parents are.
It’s dark now and once I leave behind the lights of the city I can see the stars and I imagine that there’s another tiny star shining brightly in the sky.
Louise is a full time mum and a part time neonatal nurse who has battled depression for many years but particularly during her pregnancy. She lives with her husband (the Northern One) their little boy (Squidge) and their three guinea pigs who live in the kitchen.
Louise blogs at 23weeksocks (http://23weeksocks.com) about lots of different (and seemingly unconnected) topics that she’s passionate about, including mental health, antenatal depression, neonatal care and baby loss.
In 2015 she was shortlisted in the ‘Fresh Voice’ category for the BIB (Brilliance in Blogging) Awards and the ‘Bereavement Worker’ category for the Butterfly Awards. She was also one of the keynote speakers at BritMums Live reading’Twinkle Twinkle’ which was her account of caring for a premature baby on the day that he died.