When NICU Isn’t Fair

Working as a neonatal nurse means that my colleagues and I can’t escape from the stark reality that some babies are born sick and, despite our best efforts to save them some of them tragically die.

In order to carry on working in the job that we do without burning out or making ourselves completely miserable we have to accept that sometimes there is nothing we can do to save  a baby. As heartbreaking as it is to admit it, it’s a horrible fact of life and there’s no escaping from it, much as we wish it wasn’t true.

When we lose a baby we allow ourselves to grieve and we acknowledge that our grief does not make us weak but shows that we’re not made of stone. We all know that the day that we no longer grieve is the day that we no longer truly care.

So we shed our tears and we hold the parents and tell them how sorry we are. We go to funerals where there are tiny white coffins and we remember the babies that have died in our own private ways.

But ultimately we have to pick ourselves up and carry on or risk becoming completely bogged down and losing our way and we all know this.

But even with all our coping mechanisms, methods to relieve stress and off-loading to understanding partners and friends there will always be some cases that hit us hard and that we find difficult to deal with.

For me, the babies that I find the most upsetting to care for are the ones that we have no answers for. Not only do we not know how to save them but we don’t even understand why they became sick in the first place.

These are the babies who are born to mothers who had easy, straight forward pregnancies with no indication that anything was wrong with either mum or baby. They’re not born prematurely or show any other warning signs; in most cases we have no idea that anything is amiss until the baby is delivered and it quickly becomes apparent that something is dreadfully wrong.

These are the babies who break my heart.

I sit beside her, stroking her head and rubbing her little hand with my thumb.

I’m waiting for the doctor to set up the necessary equipment so that he can scan the little girls heart.

Her little face is grey and she’s clammy with sweat. The bedside monitor starts alarming and when I look over I can see her heart rate rising even though nothing has happened to upset her.

She’s so distressed that nothing seems to calm her and the only time that she settles is when she’s asleep.

I talk to her softly; telling her that I’m here and that I won’t let anything bad happen to her. I know that she doesn’t understand what I’m saying but I try to soothe her with the sound and tone of my voice.

I know that we’ve got some difficult decisions to make for this little girl and we need this scan to help us make the one that is best for her. The scan will show us how effectively her heart is functioning but we’re not expecting good news.

I also know that because she’s so distressed we’re going to need to try and finish the scan as quickly as possible but at the same time it’s going to be difficult to get an accurate scan of her heart.

I’ve wrapped her firmly in her blanket, partly to try and comfort her but also to stop her from waving her arms around and bashing the ultrasound probe, meaning that the scan would take even longer that it’s doing already.

Her little face is so swollen that her features are distorted and her eyes are almost permanently closed, such is the effort of trying to open them. On the rare occasion that she does open them she doesn’t seem to be able to focus and they dart about wildly, displaying her obvious distress.

She hardly resembles the newborn baby who arrived on the unit in the middle of the night a few weeks ago. If it hadn’t been for the lines and wires attached to her she would have been no different to any of the other full term babies born in the hospital that night; each beautiful and perfect in their own individual ways.

The doctor doing the scan is trying to be as quick and as gentle as possible but it’s not enough.

She struggles against me and I start singing to her softly; the same song over and over, not caring that the doctor is looking at me strangely if it helps to calm her down and willing to do anything to take away her pain.

The breathing tube in her airway prevents her from making any sort of sound but it’s obvious that she’s crying in fear and distress. I can feel the lump rising in my throat and the feeling I get of my nose threatening to start running just before I cry.

I don’t know how to help her.

I don’t know what to do.

I have to grit my teeth and bite my tongue to keep the illusion that I’m calm and in control when in reality I want to burst into tears at the downright injustice of it all. I know that life isn’t fair but this.

I can’t think of anything less fair than being lead to expect that you’ll have a healthy baby to hold in your arms, only to have them snatched away from you for reasons that no one can explain.

A few days later, despite trying everything that we could, the little girl died.

We never found out why she became so unwell and, as a unit we were heartbroken that we lost her.

Accepting the limitations of medicine and of our own knowledge is one of the most difficult things about about being a neonatal nurse and something that hasn’t really become any easier the longer I’ve been a nurse.

It’s never felt fair.

I don’t think it ever will.

Picture10sundaystars.badge_Final final twinkly

24 thoughts on “When NICU Isn’t Fair

    • blopmamma2014 says:

      It means the world that you take the time to write such beautiful comments about my blogging Leigh. I know that a lot of what I write must be difficult for you to read. Thank you for reblogging this post, it’s always an honor to be featured on your blog when I admire it so much.

      Liked by 1 person

  1. Leigh Kendall says:

    Reblogged this on Headspace Perspective and commented:
    The author of the 23 Week Socks blog is a neonatal nurse. You may remember I shared her ‘Twinkle Twinkle’ post a few months ago, which was a beautiful account of the death of a baby in her unit.

    This post is an equally beautiful, and sensitively written account of a caring for a baby girl at the end of her short life. No one knows why the baby was poorly, or why she died.

    As the author says, NICU often is not fair. Sharing these stories is so very important, because every baby is valued. Regular readers of my blog may be aware of my frustration that only NICU success stories get promoted. By talking about these babies, we honour their memory – the memory of my Hugo, and every other baby who didn’t go home.

    By talking about these babies, we also honour the passion, compassion and commitment of all the nurses and doctors who care for these tiny patients. And care they do, deeply. Thank you to them all.

    Like

  2. Dean B says:

    This is heartbreaking, very well-written. I think NICU nurses such as yourself are like angels watching over these precious babies. I am in awe of all of you.

    Like

  3. mylittledreamworld1 says:

    What a beautiful post. It must be a difficult job to do some days, but as said above, it’s important too to acknowledge the lovely babies who don’t make it, and who will always be remembered, and made their mark in the world by being remembered by those who met them. Xx

    Like

    • blopmamma2014 says:

      There are some days when it feels like the most difficult job in the world and other days it hardly feels like work at all.
      I remember every baby that I’ve cared for on the day, or shortly before they died and I will never forget them.

      Like

  4. Emma says:

    It’s the first time reading your blog, as the Mum of a perfect stillborn baby the titled grabbed me. It means the world to parents to know those looking after us really care xxx

    Like

    • blopmamma2014 says:

      I’m so sorry for your loss Emma. Thank you for taking the time to read something that must be painful for you. I try so hard to show all the parents that I care, I just hope that I manage.

      Like

  5. (un)Balanced Mom says:

    Wow. I can only imagine how difficult that must be. I know parents who have children with major health problems and have had multiple surgeries as infants. I imagine how difficult that would be, and they knew it was coming. I can’t imagine the pain associated with thinking you are bringing a healthy child into the world and then have to deal with the heartbreak and loss. I commend you for being able to work in this field and support the grieving parents and sick children who need constant assistance and attention. I have a hard time separating my work and home life and know that your must be much more difficult to not bring the heartbreak home with you on a constant basis. Thank you for what you do. I’m glad I found you on #TwinklyTuesday

    Like

  6. Complicated Gorgeousness says:

    I love your posts. This one especially reminds me of our time in neonatal and having my little boy’s heart murmur picked up on day three after breathing difficulties. He had three holes (one ASD, two VSDs) and a wonky aorta. In some amazing fashion the holes closed (one was 10mm) and the aorta although misshapen works fine. Babies are amazing so it must feel so unfair when you look after the ones that can’t be saved. I loved our neonatal nurses (especially the ones that sent me back to bed) xxx Beautiful post #thetruthabout

    Like

    • blopmamma2014 says:

      I’m so pleased to hear that your little boy made such an amazing recovery, I bet the nurses were thrilled 🙂 I’m also really happy to hear that you had a good experience with the neonatal staff, I know it’s not the same for everyone. Thanks for reading 🙂

      Like

  7. thenthefunbegan says:

    You’re such a lovely person to be working in such a sensitive place – I hope the NHS are paying you well (I fear they’re not). You yourself know what a terrible bedside manner other healthcare professionals can have at a time when you need their support – emotional as well as practical and how huge a deal it is to be able to empathise. So sad about those little babies who never stand a chance though X #thetruthabout

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  8. robynedmondson says:

    Thank you for everything that you do. My husband and I were the parents watching the nurses pour their love and care into our beautiful little boy. After a healthy pregnancy, followed by a traumatic birth, our son lived for 5 days. We were not given any answers.

    The nurses made our time with him as special as they could. They made him comfortable. They loved him too.

    xo

    Like

    • blopmamma2014 says:

      I’m so sorry for the loss of your little boy and I’m glad that you were able to find comfort in the care that the nurses gave him. We do love those babies that we are privileged enough to look after at the end and I hope it shows.

      Liked by 1 person

  9. mummascribbles says:

    This is so heartbreaking and so beautifully written. I really do not know how you do what you do but you are amazing. I know I sure as hell couldn’t cope with that as a job but I am so thankful that there are people like you, at this baby’s side giving her the care and attention she needed. Thank you for sharing this truly incredible post on #TwinklyTuesday

    Like

  10. Caro | The Twinkles Mama says:

    Aaah — this has just made me sob.

    I lost my nana on Saturday. Poles apart from the tiny little life you described in your post, as she was almost 94. Why is it some people live to a ripe old age? Yet some are cruelly taken away before their lives have barely started?? Obviously this is rhetorical — you haven’t any more answers than I do but it’s just so, so unfair.

    I think you’re enormously brave, to do the job you do. To come face to face with death so regularly is incredibly sad but even worse when the patients are the ones who have only just been given life. I absolutely cannot think of anything worse.

    Thank you SO much. I think you’re amazing xx #TwinklyTuesday

    Caro | http://www.thetwinklediaries.co.uk

    Like

    • blopmamma2014 says:

      Thank you so much for saying such lovely things about me but in all honesty I don’t feel particularly brave or amazing. I give the babies and their families everything that I can but more often that not I feel like it isn’t enough. I’m so sorry for the loss of your Nana, much love to you.

      Like

  11. ApparentlyAwkward (@AwkwardParent) says:

    Thiis had me in tears. Thank you for sharing and for all the hard and powerful work that you do each day in the NICU. My friend recently had a perfect stillborn baby – it is so cruel, unfair and it doesn’t make sense. Thank you for doing a job that not everyone could and for caring so much for all these little babies, it makes it a tad easier to know they are loved and cared for so well. #TwinklyTuesday

    Like

    • blopmamma2014 says:

      It is so cruel and unfair and trying to get my head around that is one of the hardest parts of the job. I do try and care for them to the absolute best of my ability but I’m not always sure that it’s enough. Thanks for reading.

      Like

  12. DomesticatedMomster says:

    Wow, what a powerful piece of writing. Now I need some tissue but most of all I am reminded how precious the life of my little ones truly is. I am going to hug and kiss on them a little extra today and be happy that they are here…with me. Thank you for sharing this …I give kudos to you for being able to help those babies and families. #TwinklyTuesday

    Like

    • blopmamma2014 says:

      Some days my job feels like the best in the world and other days it feels like the absolute worst but every shift reminds me of how lucky I am to have a healthy, happy little boy at home with me. Give your little ones an extra squidge from me 🙂

      Liked by 1 person

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