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.