National Transplant Week – Abi’s organ donation update

This week is National Transplant Week, and I’ve just changed my profile picture in support of the campaign (see here to do the same) and I thought it a perfect opportunity to share the outcome of Abi’s organ donation. Continue reading

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Dust to dust – interring Abi’s ashes

Following on from My Great Loves guest post about turning back into dust, I wanted to share our experience of interring Abi’s ashes.

Choosing a burial or cremation is a decision I really wasn’t prepared for when Abi died. I knew she’d died and that we’d have to have a funeral, but I just didn’t consider the speed at which we needed to decide which method of burial we wanted. If we chose cremation then her body could be brought home from the hospital much faster than if we wanted her buried (paperwork!).

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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…

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Forever smiling…

The donation operation took less time than we thought, only about two hours, so we were able to see Abi by around lunchtime.

The nurse caring for her took us to a quieter part of the hospital. This was the Rainbow Room. It’s a bedroom-style room, decorated with children in mind – some bright colours and teddies, but not over the top. It was a nicer prospect than seeing her in a more ‘clinical’ room.

The nurse explained that Abi had been washed and that she’d plaited her hair. I truly felt she had cared for her just as I would. She reassured us that she looked lovely. We were nervous again, only in a different way. The anxiety of the ICU seemed to have dulled, but the prospect of seeing her ‘truly’ departed was daunting to say the least. I could barely even look at a dead bird in the road, let alone my own precious child.

I was relieved that on entering the Rainbow Room we were shown immediately into a side room with a sofa. This room had an open door leading into the bedroom where Abi rested. This made things that much easier for us as we were able to collect our thoughts and view Abi from a distance before approaching her. I can imagine the mixed emotions people must feel at this stage.

But, as I looked through the door, I simply saw our lovely daughter asleep. The atmosphere was so serene and calm. We felt no qualms about being close to her. She was naturally very still, but looked to be in a deep sleep. She had jaundice (a result of the operation) so her skin was tinged yellow but despite that she looked peaceful, without trauma of any kind. The nurse had tucked her up in bed, with all the teddies she’d spent time with, but the most remarkable thing of all was that she was smiling!

Abigail – a happy, life-loving daughter, relative, friend – had the most serene smile with an element of cheekiness on her face.  She looked as though she was having the most wonderful dream, or was pretending to be asleep and trying not to giggle.

Far from the distress of seeing my beautiful girl this way, I cannot emphasise enough the intense certainty I felt at that point knowing that she was truly in heaven. I knew that everything was okay now for her, that everything we’d done (the organ donation, the baptism) had all been so right. It was her way of sending a comforting message to us.

How she went from her coma state through death and then to smiling is beyond me, but it was so powerful an image that we took photos of her. Taking photos at various stages is something I’ll never regret. As well as being able to share this moment with her siblings (when they were ready), I need to remind myself of her serenity at this point quite often to know that I didn’t dream it. Every time I look at the images I feel a different emotion. Death is undeniably hard, it’s heartbreaking, terrifying, humbling, shocking, but it’s also very real. No one can escape death but we can learn a huge amount from it… about our life, our faith and ourselves.

My faith in God – which I had ignored for many years for various reasons – came rushing back to me on seeing Abi. I felt that Jesus was with me once again (not that he’d ever ‘left’ me), letting me know that he is looking after Abi now. This may seem a rather ‘radical’ thing for me to say, but on seeing Abi I simply couldn’t deny what I have known to be true all my life. I don’t know why I know it, I just do, it’s just that I’m not challenging it anymore.

A new chaplain visited us and we said the prayers of committal. We took some time together to talk about Abi before she left; we found we were keen to tell others about how special our daughter was, how much she had to offer, how missed she would be.

We spent some more quiet time with her. We were nervous about touching her, she felt so cold, but she looked beautiful as though nothing had happened. I gingerly kissed the top of her head, feeling the coolness of her against my lips. My eyes played tricks on me as I imagined I could see her chest slowly rise and fall, I kept having to blink to remind myself that couldn’t be possible.

One of the donation surgeons arrived to update us on the operation and she remarked how the entire surgical team were stunned by Abi’s heartbreakingly beautiful expression – she had tears in her eyes, sharing our grief at this awful tragedy. Strangely, we didn’t cry ourselves during this time. Perhaps the stress of Abi’s passing had taken it out of us, but we were almost relaxed in her company. The intensely terrible time was over… but we knew only too well that we had the ongoing grief to come once the shock had waned.

Abi was always smiling, and even though my heart is breaking and my grief overwhelms me, I know she will be smiling for all eternity…

Preparing to let her go…

Looking back, we were on a sort of auto pilot when we knew that Abi would die. Far from the panic and distress of her collapse at home, our situation was now more peaceful, with an element of tension. We could ask the consultant to turn off the life support machine when we were ready. It gave us some sense of calm control over the situation. Of course, you’d think the natural instinct would be to refuse… to never let them turn the machine off… to cling to her lifeless body, to wait just one more day. But we knew, we just knew in our hearts that Abi had died on our bedroom floor three days before, we knew she wasn’t coming back.

So we were in some ways ready for the turning off of her machine and wanted it done as soon as we said. The organ donation aspect did mean the terrible process felt ‘drawn out’, but we knew it was an important factor in Abi’s life and death. A part of her legacy if you like.

The evening before her death, while we were sat with her while waiting for the organ donation team to sort things out, we were able to make some mementos of Abi. The nurse caring for her brought out a box, with paint and paper, for hand prints, and ribbons for locks of hair. These things I recall doing when Abi was a baby, but doing it now took on a whole new meaning. We carefully took three hand prints – a practice one, and one of each hand – in blue paint, her favourite colour. It took three of us to do this as she had no movement and it was fiddly, but the prints came out well.

Abi's handprint

I then went and stood behind the head of the bed (you could walk all around the bed as it was in the middle of a large room), and plaited a section of her hair and then cut it out. I felt somewhat guilty for cutting her lovely long hair as I knew she wouldn’t like it, but I knew we would need this to hold and comfort us when all this was over. I tied each end of the plait with light blue ribbon.

Abi's plait of hair

The nurse left us alone with Abi for periods during this night, so that we could spend time with her in private. We kissed her cheeks and hands, stroked her forehead and talked to her. We told her again how much we loved her, how proud we were of her; we didn’t talk of her dying, we just recalled our fond memories of holidays gone by, of her hopes and dreams. We always talked to her as though she would recover.

We played ‘Yellow*’ to her on my husband’s phone, placing the phone by her ear.  Tears flowed, as they always do when we hear this song, but this time they were tears of love mixed with the deepest sorrow I’ve ever felt. I felt the first intense pangs of grief at that point – the feeling that I can only allow myself to feel for short periods because it is so overwhelming.

But as much as the pain of seeing her this way and knowing that in the morning she would be gone was too much to bear, so too was living our days like this. It was a form of torture that I’ve no doubt would impact me deeply if it continued this way forever… it had to end to save our sanity as well as to save her from further ‘suffering’ living this way. It was getting late and we were both exhausted… we really wanted to have clear heads when Abi’s life support was turned off, so we went up to our room to try to sleep… and wait for the inevitable phone call that would mean the end was now.

*Yellow by Coldplay was the song that played in our car as we went home from hospital when Abi was born. I can recall as though it were yesterday, I was sat in the back seat with her in her car seat, looking so tiny in a yellow knitted cardigan and bonnet, tears streaming down my face in joy and anticipation of being a new mother. The song seemed to reflect everything of Abi and our love for her – she was blonde, sunny, yellow… the stars did seem to shine just for her.

She’s not coming home…

Telling our children that their much-loved big sister wasn’t coming home was quite possibly the hardest thing we’ve ever had to do.

Having broken the news to our family, that Abi’s life support would be switched off, we went to see our other children and took them out of the hospital for a walk. We walked up to the toy shop we’d spotted earlier that day, to buy a teddy for Abi and a toy each for them. They chose a small soft brown rabbit for Abi. We left the shop and began to walk on up the street, trying to find a bench or somewhere outside we could talk to them. It seemed important to be outside. It was cold and wet and they weren’t happy at being dragged out, but we came across a (sadly) boarded up church next to the hospital. [I’ve just looked this up and realise it was called St Michael the Archangel, and was made redundant in 1999 due to a low congregation, such a shame but even still it offered us a place to go.] It wasn’t in the best condition at all, but it was quiet, private, and there was a low wall we could sit on.

I sat down and cuddled them both tightly. ‘We have some news about Abi. You know that we said she might die and that she might not come home. Well, we have found out that she’s not going to be able to get better. The doctors have tried everything they can, but she’s not going to come home, ever. She’s going to die.’

My son stared as he listened to this and then put his head in his hands and turned and buried his face in my coat. My daughter stood away and smiled nervously. ‘What? She’s dead now?’

‘No, not now. But she is so ill that she will probably die later today.’

My son still didn’t speak. He wiped a tear from under his glasses and kept cuddled in. My daughter asked lots of questions about when and how, which we tried to answer as honestly as we could. We offered them the opportunity to see her again, but they declined. We weren’t going to push them to do this, but I offered to take photographs of Abi to show them later, which seemed a good way to help them ‘see’ her.

There wasn’t really much else to say. We sat on the wall in silence and comforted them, tears in our own eyes. I couldn’t really comprehend what we were saying but knew we had to focus on them now. Then they began to complain about the cold and wanted to go back. So we walked back to the hospital and they chatted about ‘other’ things, mostly about wanting us to come home. We weren’t sure if they’d taken it in, but we later realised they had, it was just how children do things regarding grief.

The children were taken home shortly after, while we spent more time with Abi. They had moved her to a private room on the side of the ward, where she would spend her last moments. When we saw her again, after the meeting, it was far more painful than before, as we knew for certain that this was the end, that there was no more hope. The tears flowed as fresh as the first moment when it happened, and my husband and I just looked at each other with such pain in our hearts, not even needing to speak. I placed the soft brown rabbit in her hand and kissed her forehead telling her we were there with her and would be until the very end. We had been given a pile of cards from her friends and family and we stood at her bedside and read every one to her, every word, all wishing her to get well soon. It was utterly heartbreaking reading aloud, our voices breaking with grief, and knowing what we knew. The love of her friends came through so strongly, and we felt for them all… about to lose a special person in their own lives.

But we had some way to go yet, as we had offered Abi’s organs for donation. We were prepared that her death would happen that evening, almost so that we wouldn’t have to ‘get through’ another long, difficult night, but it happened that the donation process delayed the inevitable for another 12 hours, into the next morning…