Into eternal sleep… turning off life support

These words were hard to write (just a month after Abi died last year), and I expect are just as hard to read. But talking about dying matters to me.

I know there are other parents going through this every day – saying goodbye to their baby or child, whatever age, whether expected or not.

No matter what brings them to this day, at the very end, they will only die once and, as much as I am more likely now to remember the happier days with my daughter, her life, I feel her death was also a significant moment that should not be forgotten simply because it is too painful to remember. I share this experience knowing that, right now, a parent is going through the same heartache. I hope they find this and it brings them comfort knowing they’re not alone.

In my last post I talked about our decision to donate Abi’s organs. Having been informed by the consultant that recipients had been found we next spoke to the organ donation team. They updated us on the final things they needed to do.

It was around 6.30am. The staff were quiet and respectful. The consultant apologised when she told us that there would be a further delay of an hour as a baby had just been rushed into the theatre unexpectedly. But we were okay with this. It was still dark outside. We didn’t want Abi to pass away in the dark, she was a morning, sunny girl. So we said that about 8am would be our preference, when the sun was coming up and the dusky gloom had lifted…

We, therefore, had a bit more time with her. I was incredibly nervous, trembling. Looking at our beautiful girl, I can’t express enough the feeling of just wanting her to live and, even until the last minute, I hoped upon hope that she would suddenly do something… move or open her eyes. But this wasn’t a soap opera, there would be no miraculous turnaround.

At the same time, there was also a real fear on my part that she would make a movement or show some sign of life. Imagine if she responded to our touch by squeezing our hands… she could not support her heart or lungs so she would die regardless, so the fear that she might be ‘aware’ of her impending death was too much to contemplate.

The staff continued to care for her in the usual way, I almost half expected the level of care to drop now that they knew there was no more hope, not in the caring sense but in the practical sense, but no, they brushed her teeth, kept her medicines topped up and treated her as though she were about to recover.

I loved them for doing that.

To avoid any potential distress on her part, they kept her sedated and also topped up with morphine to ensure she felt no discomfort. This was vital to us, to ensure she passed away as peacefully as possible.

We were offered the chaplain to come and visit us. My stomach lurched again as the realism hit hard. We accepted.

Shortly after, a vicar arrived and he asked if we would like Abi to be baptised (something we regretfully had never got round to doing). We agreed and he performed the service by her bedside. He anointed her with precious holy oils and said she would become a ‘princess of heaven’. We were given a baptism card, just like any other baptism, except this time with the date of her death written on it, and also a baptismal candle. We prayed together and he left.

Then the door opened. The consultant said they were ready. So it was up to us now. We gave them the nod. The consultant was present throughout this part, she was in charge of turning off the life support (although they kept her sedated and pain free throughout). We knew this was really it.

I was scared and felt guilty for being so – she needed me now more than ever. They warned us that her death might take some time, possibly an hour, and that it’s far from the scenes you see in a Hollywood film. I recalled the night she collapsed, seeing her change though loss of oxygen, hearing the noises as her lungs emptied, I couldn’t bear the idea of seeing or hearing that again but I knew I had to get over my own fear to be with her and be near her during her passing. Just as I gave birth to her, I would be there for her at her death.

The machines stopped bleeping and the wires had all been removed. The room fell silent. We kissed her, but as she died I sobbed into my husband while holding her hand. I couldn’t bring myself to look at her face, to see the little life that was left leave her body. There were no words now, only tears.

Opposite me, I could see the heart monitor, silently showing its bleep. When that line stopped flashing, she would be gone…  I felt a mixture of surprise and relief as well as the inevitable deep grief when the line stayed flat. We didn’t hear any noise at all. Abi simply let go.

She was born at 8.13am on 26th November 2000… she finally fell asleep at 8.51am on 10th February 2013. She was 12 years and 3 months old.

Her death was so quick, so quiet, so peaceful that it seemed to be a continuation of her collapse. If we’d not resuscitated her, she would have died quickly at home (a frightening aspect of a brain haemorrhage). The speed of her final passing confirmed that it was what was going to happen all along.

The consultant told us our five minutes had started (this was the five minutes we were allowed with Abi before she was taken off to theatre). They left us alone with her. I kissed her hand continuously during those five minutes. Stroking her body. The room was so quiet now, but it did not feel deathly so. The morning sun shone through the small window.

And then they quietly took her away.

The nurse placed an unconnected oxygen face mask over her mouth and nose, as a way to retain her dignity as they pushed her through the ward to the theatre, so that it wouldn’t be obvious to other patients and visitors on the ward that she was dead. I spared a thought for the job they do day in, day out – caring for the barely living and dying all at the same time.

We were left in the now-empty room. We held each other then sat down, numb, the tears just rolling down our cheeks. The room appeared huge with the absence of Abi’s bed – the empty space highlighting that she was gone.

The consultant and nurse came back in and sat with us. They offered such kind support at that time. They shared our disbelief at how this tragic thing had happened. They offered a hand to hold and words of advice. They took their time, there was never a feeling of being hurried. The consultant advised that the grief would be like a sharp stone in our stomachs, which would gradually smoothen over time to feel more like a pebble. The weight of the stone will always be there, but the pain will lessen in time.

She gave us some leaflets and explained about registering Abi’s death and how to organise a funeral. It felt absurd that we now had to plan her funeral.

We were told the organ donation operation could take about four hours, and then we could see Abi after. The nurse offered to prepare Abi for us – washing and doing her hair, cleaning and dressing her – before they placed her in what was called the ‘Rainbow Room’. This room in Bristol Children’s Hospital is set up like a child’s bedroom and it’s where you can view and sit with your deceased child. It’s so much ‘nicer’ – if that word can be applied at all – to being on the ward.

We went back up to our room and updated our family and friends about Abi’s passing before going for yet another walk in the fresh air, this time with new feelings of longing and anticipation of seeing Abi again.


22 thoughts on “Into eternal sleep… turning off life support

  1. I am sat here reading this with tears streaming down my face. I would like to say Thank you Kelly for sharing such an emotional and private part of your life and of Abi’s passing. You are truly amazing. It enforces the need to make sure that you tell the ones you hold dear that you love them every single day xxxx

  2. Oh my goodness, I have no words. I cry at all your posts, but I am a gibbering wreck at this one. But thank you for sharing and I totally understand why you would want to remember such an important time. I hope the sharp sides are becoming a little bit more like a pebble for you now. x

  3. I can’t begin to imagine how hard it must have been for you to write this, to remember how this happened with such detail and longing. I feel like the words of love I want to send to you are crass, because I’ve not met you but you have shared your blog with me after I wrote about my loss. I haven’t written about the moment of Neil’s passing because I was not there, this is something that still causes me pain and I can’t (or won’t) find the words. Thank you for writing this and sharing to show people they are not alone, thank you for being so kind to me in your tweets to me, I hope writing this and seeing it shared is helping you, you have written in such a way that’s so real, not like me writing in my journalist’s restricted vocabulary, always with an eye to making things easier for a reader rather than truly expressing what I feel — uncompromising and raw. I’ve also read your post about your epiphany in the garden, I cannot for one millisecond know what it’s like to suffer what you have, but I do recognise elements of what you write — yet ANY mention of the ‘h’ word (happiness) and a stab of guilt pricks at my heart.
    I think yours is a very, very important blog, I wish you so much love and strength and I will be back to read more of your story when you feel you should share, if when you have posted you want to let me know, I will be sure to read and if you want me to, I can share xxxx

    • Thank you Linda for your heartfelt comment. It feels strange to bond with people through our mutual grief but we have been to the darkest place where people are generally numb and silent. Abi seemed to have a perfect death, hard as that is to say! I know that it’s rare and there’s so much suffering, anger and hurt around death. I do hope my words help rather than hurt people. I want people to understand that the memories don’t ever fade or ‘get better’ they remain and we have to find a life around them. You’re right about happy, I may have happier feelings in the future but I won’t ever know true happiness again, but my children can I don’t want to rob them of that.

      I have plenty more to say, as I’m sure do you. Please also let me know when you have something to share. Your courage has helped me a lot. Tomorrow I go on local radio to talk about my blog and I take strength from what you did to speak in a way that needs to be heard. Xxx

  4. Hello Kelly,
    I found the link to your blog on the cruse website,I was looking for support as I lost my darling big sister in January, and miss her so so much. I felt if you were brave enough to write about losing Abi, I would be brave enough to read your words. they are beautiful, yes, hard reading, but i can also relate to it, as I have felt similar pain. I too can say my sister had a “beautiful ” death, so peaceful and simple , I still cannot believe she’s gone, but have to live without her, as you do Abi, easier said than done eah. Thankyou for writing this blog, I will continue reading xx

    • Oh Alison, I’m so very sorry for the loss of your sister. A sister is a special person and I feel for my children every day to have lost theirs so soon. I thank you also for taking the courage to read my blog, I know it’s not easy to do but it’s how life is for us now, so reading about it can’t be worse than living it. The reason I write such painful truth is to help in some way people who are also trying to understand what happened. We are now all part of this horrible grief club but by sharing we can hopefully ease the burden a little. Thank you so much for taking the time to comment. It has truly lifted me!

  5. Yes, i agree that sharing your experiences and feelings help so much, people dont want to talk about death, i was so very afraid of it before, and now im not .
    I can only imagine the heartache and pain losing a child can bring, my own son had cancer at 17 ( thank goodness he recovered) but the fear that i would lose him was so very intense i thought it would finish me at times, i was very lucky and feel grateful every single day for him x You are a very strong lady, i admire your courage very much , keep living each day and one day, life will be ok, it will never be right, but it will be ok x

    • Thank you so much Alison, it’s good to talk and meet lovely people like you. Abi’s death has changed my life in many ways and not all of them are sad xx

  6. Oh my..the tears wont stop.
    Such a beautifully written post, the respect and dignity the nurses and consultant showed during Abi’s passing is humbling.
    I can’t imagine the pain of losing a child, we were fortunate the lines on Ethan’s machines didn’t remain flat, any words I share feel so inadequate, but I must thank you for sharing this post, it will no doubt offer some comfort to those about to experience similar.

  7. Your strength and beauty of writing through such an impossibly painful subject has me in awe. It took so much to share this with all of us but I do so hope (and am sure) this brings understanding and hope to anyone who has to endure a similar situation.


    • Thank you. Writing it has helped immensely. It feels a bit like therapy to get it out there sometimes. It’s capturing those tough times as well as the good. We’ve had a great time together since this. x

  8. I am in tears just reading about what you and your family have been through. I can’t even begin to imagine the depth of your grief. I hope that articulating some of your emotions on the blog help you to work through this experience. Your faith and love for your daughter shine through.

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