Twinkle Twinkle

 

 

 

 

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.

55 thoughts on “Twinkle Twinkle

  1. beamfrost says:

    Such a sad post. Never something you want to have to deal with. Thank you for doing your job. It is something so many of us just couldn’t do, but you are human and so you too need to grieve .

    Like

  2. Katie (@mami2fiveblog) says:

    I had a lump in my throat through this entire post. I have always believed that working with sick children has to be one of the toughest jobs there is. This post has just reaffirmed this in my mind. You, and everyone in this area of work, needs to have that special something extra to be able to carry on after moments like this. I’m not sure I could be that strong.
    Thanks for linking up with #SundayStars x

    Like

  3. Julia @ Rainbeaubelle says:

    Gosh I’ve just had a cry reading this. It must be such a difficult job working in NICU, you are an angel. My husband was in intensive care a few years ago and it was an intense, heartbreaking place to be. What a beautifully written post. This mum would be honoured in the future if she knew you’d written about her I’m sure. Thanks for linking up with Sunday stars x

    Liked by 1 person

  4. Mrs H says:

    This is the most beautiful but tragic post. I don’t know any parent who could read this and not be hugely moved by such a sad story. It is only natural that you as a nurse would be affected too. Losing a child is the worst nightmare for any parent and I can’t possibly imagine the pain involved. Thank you for sharing this poignant moment in such a beautiful and considerate manner. You sound like an amazing and truly caring nurse. Hugs Mrs H xxxx #SundayStars

    Liked by 1 person

    • blopmamma2014 says:

      Thank you for reading and for your lovely comment. It’s become harder to deal with since I’ve had Squidge but I think it’s also helped me to understand a little of what the parents are going through. I can’t think of anything worse than losing Squidge.

      Like

      • Leigh Kendall says:

        Oh there’s no need to apologise. You describe it so beautifully. It’s an insight for others to be able to see what happens, and how indescribably heartbreaking it is for the parents. It’s also good for others to see how much the staff care for the babies, just like how Hugo’s did xxx

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  5. oana79 says:

    The memory of your tears will bring comfort one day. Our CHU nurses cried with us when we were told our little baby boy will not live. Our nurses cried with us in the hospice when he passed away and at his funeral. And the memory of those tears bring me comfort now, six months after he left us. I know he was loved. No only by us, by by so many other people. Most of us, by his nurses, who had become his family during our long stay in the CHU. Thank you for your tears and your post.xx

    Liked by 1 person

  6. Kiran Chug says:

    I’ve not really thought about how this must be for staff on the neonates wards. I know it isn’t your grief, as you say, but still, I can’t imagine the pain you must see – and so feel. It’s a very special thing you do, and I’m sure your kindness in such a time of unfairness will be remembered. My heart feels broken now, but thank you for writing xxxx

    Like

  7. Victoria Welton says:

    A really beautiful post. Of course you are not made of stone. Any humane person in a position like this would cry. You are so brave to be able to do this job – it takes a strong, understanding person xx

    Like

    • blopmamma2014 says:

      Thanks for commenting Victoria. I don’t feel brave, most of the time I feel anything but and I worry about saying or doing the wrong thing. It’s such an awful time and I’m so aware that i could easily make it worse.

      Like

  8. sabrina says:

    What a moving post – makes me appreciate those close to me. You have such a difficult job, I could not do it. What a kind, strong person you are. Thank you for sharing x

    Like

  9. zofloya11 says:

    What a moving post, I have been moved to tears. You are so strong to do the job you do, I wouldn’t be able to do it. The feelings you have for those children and their families shines through, I am glad you are there to care for and support the children and their families when they are going through such a heartbreaking time. thank you for sharing.

    Like

  10. Astrid says:

    Here via Leigh’s blog. This is absolutely beautiful. I don’t know what it is like to lose a child, and I hope never to find out. I also don’t know what it is like to spend time in NICU as I was myself the baby back then but too young to form memories. This connection to neonatology does make me read everything I can get my hands on on preemies and sick newborns. It is sad that still so many have to pass on. Your post is heartwarming and heartbreaking at the same time – I can feel the effort you put into making this boy and his family feel comfortable, and the grief you and the family feel.

    Like

    • blopmamma2014 says:

      Thank you so much for reading and for your lovely comment. Wow, an ex-NICU baby, I’ve only ever met one other adult who was on NICU as a baby. Unfortunately we do still lose babies; medicine and technology have come such a long way in the last ten years but we can’t fix the tiny bodies if vital bits are missing from being born so early.

      Like

    • blopmamma2014 says:

      I really hope that I do manage to bring them some comfort even though half the time I don’t really know what to say or do. I try to think about what I would want from a nurse if Squidge was in hospital and to learn from the senior nurses who’ve been working with babies and their parents for years. thanks for reading and for your lovely comment.

      Like

  11. Yvette @ BigTrouble says:

    I’m sat here in tears – for this little boy, his family and for you too. Your job must be so hard at times but I am sure you were such a comfort to them.

    My son was in NN, thankfully for a short time, but the staff were incredible at such a tough time and we will always be forever grateful.
    You write beautifully.

    Like

    • blopmamma2014 says:

      I’m so pleased your experience of the neonatal team was positive; I’m always aware that I could quite easily make a difficult situation worse by saying or doing the wrong thing. I hope your son is well now and causing lots of trouble, just like he should be doing. Thanks for reading and for your lovely comment.

      Liked by 1 person

    • blopmamma2014 says:

      I’m so sorry for you and your sister-in-laws loss, I hope her experience of the neonatal team was as positive as it could have been at such a difficult time. Thank you for reading and for your lovely comment.

      Like

    • blopmamma2014 says:

      I’m so sorry for you and your daughter’s loss and I’m so glad that your experience of the NICU team was positive. Thank you so much for reading while you’ve only just started to grieve and for your lovely comment.

      Like

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