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Louise's story: A nurse's perspective

07 February 2015

Written by Louise, author of the blog ‘23 week socks’:

I went into neonatal nursing straight from graduating and it's where I intend to work for the rest of my career. I love working with babies and their parents, helping them to change their first nappy and give their baby their first cuddle or bath. One of the best parts of the job is being able to send the babies home although sadly this doesn't always happen. I love the intensity, the precision and delicacy needed to care for these tiny, fragile babies and the trust put in us by the parents and families.

I've worked in some of the biggest and most advanced neonatal units in the UK and everywhere I've worked Bliss had worked alongside us to support the parents during the most difficult and distressing time of their lives. We use so many of the resources provided by Bliss including information booklets and leaflets about coping with having a baby on NICU, financial help available and how to adjust to taking baby home. We also use the posters and stickers to encourage skin-to-skin and kangaroo care for the mums and the dads; the dads especially think that it's something they're not allowed to do.

Bliss is an amazing charity and the work they do is vital in raising awareness and conducting research into why babies are born sick or prematurely and how we can improve the care that we give. They help us as nurses to do our jobs to the best of our ability and to be able to send even more babies home to start their lives with their families.

Below is one of the posts from my blog, one which was incredibly difficult for me to write:

Twinkle twinkle

“Twinkle twinkle little star is one of Squidge’s favourite songs to have sung to him when he’s tired and trying to fall asleep.

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 Northern One 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.

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.

She would do anything rather than let him go.

He has fought so hard 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.

We sat in the quiet room; me, the surgeon, the consultant, mum and dad and we tell them that there’s nothing more we can do to save their son.

Mum breaks down into inconsolable sobs.

Dad sits with dry eyes; he’s beyond tears.

The surgeon looks defeated, the consultant looks broken. I know he has children of his own.

I sit beside them 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.

There aren’t any.

There are no words to describe your feelings at the loss of a child.

I sit with mum and dad while they try and decide what to do next. They know what they need to do, 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.

I say 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. I hold her close and stroke her hair in the same way that I would with Squidge 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.

My tears escape and run down my cheeks although my voice is steady.

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 nothing else; we’ve stopped everything else so that there’s as little connected to him as possible. The morphine keeps him free of pain and the ventilator keeps him breathing and his heart beating until mum and dad have done everything that they need to do.

I kneel on the floor at mum’s side, the doctor sits on the floor in front of her and helps her to gently remove the sticky pads holding the breathing tube in place. I hold the tube so that it doesn’t slip.

I adjust my position and mum almost screams, thinking that I might remove the tube before she’s sung to her little boy.

The last thing she can do for him in his far too short life.

She starts singing and I slide the tube out of his airway and out of his mouth.

I have never removed a breathing tube before.

I try not to think about it, this isn’t about me.

She sings the words over and over; her voice thick and cracking but she doesn’t stop.

Tears run down her face and onto her jumper.

I cry too.

I need to be strong for these parents and their baby but I’m not made of stone.

My tears speak to them of my sadness at their loss far more than any words ever could.

The little boy passes quickly and quietly, 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.

Another tiny star shining brightly in the sky.

Twinkle twinkle little star.

Do you know how loved you are?”

The sequel to this post, “Little star” and others can be found on the 23 week socks blog

If you have been affected by any of the issues raised in this post please call the Bliss helpline on 0500 618 140 or visit our support pages

Bliss would like to thank all of the amazing nurses and doctors doing incredible work every day, helping babies and their families.


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