Wearing her favourite Disney dress and with flowers in her hair, Daisy Nimmo looked like a little princess.
Her eyes were closed and she seemed peacefully asleep, with fairy lights around her bed as her favourite music played softly in the background.
The image still brings so much comfort to her mum Stephanie because, tragically, Daisy wasn’t asleep, she had died at the age of just 12.
It was thanks to a special mattress Stephanie was able to collect such precious memories during a week with her little girl after she had passed away.
For the mum and her three other children, being able to say goodbye to Daisy in their own home was crucial to the grieving process.
“She just looked like she was asleep,” the 49-year-old mum says. “It was amazing to be able to feel like she was with us. You have these visions of her looking like something from Silent Witness, lying there in the mortuary, but it was just like having her home again.”
Daisy died in 2017 of a rare condition called Costello syndrome, which affects fewer than 300 children worldwide.
It is caused by a mutation of a cancer- causing gene, which meant Daisy had a 17% increased risk of developing a cancerous tumour, heart and bone problems. She lived longer than doctors expected but eventually it was too much for her body to cope with.
After she died, Daisy’s family were able to take her home to Wimbledon, South West London, for an extra week before they laid her to rest because of the special cold mattress.
“When Daisy came home she was in her nightie, we put her duvet on her and tucked her toys around her,” Stephanie says.
“I played her music, the soundtrack to Frozen, we had some candles on. My children and I just drifted in and out of her room. It was like she was sleeping. But I did keep expecting her to wake up and say ‘go away!’
“People might hear that and say, ‘Oh my God, that’s really freaky’, but it felt like the most natural thing in the world. I felt I’d reclaimed her. I’d brought her away from a traumatic death and a medical environment and she was just my little girl tucked up in bed.”
The technology is not widely available but a small number of hospices have the mattresses.
Stephanie, a writer and campaigner, explains: “It’s a blue, plastic-coated mattress and it has cooling fluid and is attached to a tube. It acts like a padded fridge or a freezer block, you put that on the bed and put normal bedding over the top.
“I was astounded that there is very little information about these cold mattresses. If Daisy had been under a different hospice, we wouldn’t have been able to take her home after she died.
“The most horrific thing for me is that she would’ve had to go to the mortuary. Embalming was the other option, which is horrible. How horrific – you’ve just lost a child and then have to go through that.
“The mattresses seem to be really rare, we were so lucky our hospice uses them.”
They took Daisy home for a night and then spent seven nights with her at Shooting Star Chase children’s hospice, where she spent so much of her life.
It has been a traumatic couple of years for the family. Stephanie’s husband of 23 years Andy died from cancer a year before Daisy in December 2015, leaving Stephanie as a single mum to Daisy, Theo, 21, Xanthe, 19, and Jules, 15.
Being able to spend the extra time with Daisy has been hugely beneficial to them all.
Theo and Jules decided that the night with Daisy at home brought them enough closure, but Stephanie and Xanthe spent the rest of the week with her in the hospice, where they re-created Daisy’s bedroom.
Stephanie says: “My other daughter spent so much time with Daisy in the hospice, she painted her nails, did her make-up. After Andy died, she didn’t want to be there right at the end.
“But actually with Daisy, she said being able to spend time with her and dress her up in her favourite Princess Anna dress, from Frozen, and put all her toys around her was so healing.”
Now Stephanie is able to remember her daughter at peace.
“Daisy looked so relaxed at the end,” she says.
“She had been in a lot of pain for the last few months of her life and was very tense. When she died, we all said how long she looked because she wasn’t tense any more.
“In my mind I have that beautiful picture, not on a ventilator and bloated from the fluid, with tubes everywhere.
“I have a nice picture. Had I not been able to have that, my last memory of her would’ve been before she went to the mortuary.”
Stephanie speaks openly about death and believes that as a society we need to change our attitude to grief.
“We shouldn’t be scared of death,” she says. “Maybe if parents of children who are life-limited knew they could take their child home and spend time with them in this way, it might take some of the fear of death away.
“People can be taken aback because I talk very openly about death, but for me it’s really important. When I tell them how healing it was and how it was about Daisy being a little girl and not a patient, they see it. The problem we’ve got as a society is that there’s a huge taboo around death.”
Stephanie says many of her friends were scared of seeing Daisy after she died but found it was nice to see her relaxed and not in pain.
She says: “I sat there in the evenings with a gin and tonic, planning the funeral and she was just there with me. My friends came and we sat with her.”
“It really normalised it. It felt like how the Irish do death – they have a wake and everyone comes to see the body. It felt so normal that we were preparing her for the funeral and saying goodbye.”
It is Children’s Hospice Week, which has made Stephanie reflect on how much she cherishes that extra time.
She says: “I know more than most that life’s short. I cherish every precious moment with my family, I remember happy times and I enjoy the little things, they really are the big things.”
- Was This in the Plan? by Stephanie Nimmo, Hashtag Press, £12.99
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