The final prognosis

On the morning of Saturday, 9th February, we were allowed into PICU while the doctors did their formal assessment of Abi’s condition. We knew these were ‘last chance’ tests.

Abi had been in a coma for over 48 hours. She’d shown very little response since her collapse other than coughing a couple of times and some slight reactions in her pupils to light. Whenever the nurses had to do anything to Abi – such as put her on manual ventilation to change her feeding tube or move her in the bed so she didn’t get sore – we usually left, as it was very hard to watch. But this morning we stayed a bit longer.

The consultant got on with various tests, which included the knee reflex. We watched as he lifted her leg, whacked her knee a few times – her leg didn’t respond. We watched as he shouted her name loudly in her ear, ‘Abi, can you hear me?’ – no movement. We watched as he pressed his thumb deep into her eye socket (apparently they check for response to pain also) – nothing. He pinched her too – nothing. He shone a light into her pupils – not much response. He didn’t tell us his prognosis during all this; we didn’t need to hear it, we could see for ourselves. Feeling more downhearted by the minute, we excused ourselves and left.

What we saw rested heavy on both of us and, having been cooped up for hours, we found ourselves walking outside for some much-needed fresh air. We wandered across the road and went and had a cooked breakfast in the local cafe. We weren’t hungry but we’d been living off packed sarnies and chocolate bars for two days so felt in need of something to give us proper energy. We knew we’d need it this day, of all of them.

We then took a stroll and came across a toy shop, which had some lovely teddies in; we decided to take our other children there when we saw them. So far, Abi’s brother and sister had been brought to see us every day, but we knew they missed us being at home, their routine had been disrupted, they were scared for Abi, and we missed them terribly. As we wandered around, we got a call from the staff nurse to say the consultant was ready to see us with his prognosis.

In the meantime, our families had arrived and were waiting in the waiting area downstairs – our parents, siblings and children. So we quickly said hello and then headed back up to PICU.

We were shown to a boardroom next to PICU and sat down with two consultants, the sister in charge and a staff nurse, who’d been helping take care of Abi that day. We sat down, quietly, holding hands. The consultant then told us that the result of their tests confirmed to them that Abi’s brain stem had been damaged beyond repair and as she had shown no response at all that she would not be able to sustain life – breathing and a heartbeat – on her own.

This news didn’t hit us that hard, we already knew as much from what we had witnessed. The most difficult aspect of their news was that they could not be certain if the main (top) part of her brain was damaged – her awareness, thoughts and emotions, although this was likely given the damage. What this meant was that even if she could regain some kind of consciousness and sustain her breathing, she would likely have what is called ‘locked-in syndrome’. This is where the brain thinks but the body can in no way convey the thoughts, not through movement, speech or sound. The consultant told us with great compassion that this was her ‘best case scenario’ and even if it were possible it would be a truly awful life, to the point of torturous, for her.

We knew instantly that this would not be Abi, who was so full of life and happiness. We had felt to this point that even if she were brain damaged we would of course do everything we could to care for her, but we knew that in many ways the ‘kinder’ option was to let her go and be remembered for who she truly was. But, in the event, it wasn’t even an ‘option’ – her death was always going to be the outcome.

I asked the consultant about organ donation at this point – which I’ll discuss in another blog. It was agreed that they would set things (being her death) in motion with donation in mind. We had to prepare ourselves for her to die later that day.

They left the room and a nurse brought up most of our family, except our children. We then had to break the final news to them, that now would be the last time they would see her alive. The grief spilled out all round us, some stunned and silent, others openly anguished. I was relatively composed, almost going through the motions of breaking the news in such a way so as to protect and comfort those we loved as much as possible.

Now fell upon us the dreadful task of telling our children, Abi’s younger siblings, that their big, beautiful sister wouldn’t ever be coming home…


8 thoughts on “The final prognosis

  1. I cannot imagine the strength it must take to write this, and to live it all over again. I am heartbroken for you all, but so grateful to you for sharing Abi’s story so honestly.

  2. Just devastating to read. I’m sure this day must always be on your mind, but it must have taken a lot of strength to write that. Thinking of you as ever. X

  3. This post was raw, honest and most of all, real. Walking through the steps of this sad day painted an honest picture of life, of leaning on others for support, of accepting that unimaginable sadness is a part of the strange, wonderful and short time we have on this Earth. Your writing expresses without effort, and your words describe without excess detail. Your daughter, so full of “life and happiness” as you put it – that is the way she will stay, perfect in everyone’s eyes forever. Thank you for sharing Abigail’s story – the death of a child is an unspeakable pain, but by creating open dialogues such as this, you are making the process of grief something easier for everyone to talk about, and in turn, making a lot of lonely people feel a lot less alone.

    • Thank you so much for your kind words, they mean a lot to me. This month would have seen Abi celebrate her 16th birthday… I try to remember the light that she was not the darkness of this day. Writing has been immensely cathartic and I hope has been some comfort to others x

  4. Pingback: Sick with grief – Chasing dragonflies

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