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The story of Caitlin-Jade
Eleanor Crowther

The story of Caitlin-Jade

The time immediately following the loss of a child can be an overwhelming battle of emotional and practical demands. Our Butterfly Suite offers newly bereaved parents and families the opportunity to spend much-needed time saying goodbye in a peaceful setting, away from the interruptions of everyday life. 

We spoke to Nicole Robertson, whose family used the Butterfly Suite after the passing of her sister Caitlin-Jade, about how this service helped her and her family. 

Caitlin-Jade was a patient of Andy’s Children’s Hospice from the age of 12. Nicole explained, “It took a long time for my mum to agree to respite care for Caitlin. When Caitlin was born, she was more than healthy but over time a lot of complications happened. When it got to the point where she couldn’t go to school as much, as she ended up having a long line in her heart, that’s when the hospice was considered. 

“For my mum, that was her daughter, it was up to her to raise her, and she was her responsibility. But she realised that maybe she was being a bit selfish, not for herself but for Caitlins sake because Caitlin needed that break from mum as well. She needed that break from being within the same four walls, so it was really good for her to come to Andy’s.” 

The years Caitlin spent at Andy’s, Nicole describes as “so happy”. Due to Caitlin’s health conditions, she was unable to communicate verbally, something Nicole says didn’t hold her back. 

“Caitlin had a lot of health conditions, but she was always happy and gave you a beautiful smile. She couldn’t talk but she had her own way of communicating with her family. 

“Caitlin really loved coming to Andy’s and she really came out of her shell. It sounds silly because she couldn’t communicate but we could all see the difference. She was happy here.” 

During her time as an Andy’s patient, Caitlin celebrated a number of birthdays. Her 13th birthday party was held at Andy’s and even featured a limousine ride! Caitlin also had her 18th birthday party at Andy’s. 

“We had her 18th birthday party here which she loved. There was a Pink tribute singer as the entertainment who flew over from Benidorm of her own accord. We didn’t pay for her to come or anything like that, she just did it herself for my sister,” Nicole said, adding, “The staff were super involved as well. The catering was covered by the team here, everyone really helped out and made it special for her.” 

As the family had spent so much time at Andy’s, the Butterfly Suite is something that they were aware of and “hoped would be a possibility”. 

Caitlin-Jade passed away in the hospital in 2022 and was brought to the Butterfly Suite for seven days. 

Nicole describes the Butterfly Suite as “comforting” and that “it’s important for people to know that it’s not scary”. 

“My mum would talk to her, and it was like Caitlin was sleeping in bed. She looked the same, she was pale, but she was always pale, and she was cold, but she was always cold. 

“We got to get her a dress and do her hair and things like that. Things that you don’t think you’d be able to do. It gives you that extra bit of time. We were able to use the family accommodation, so my mum and other relatives could stay over and be close to Caitlin. My grandparents and uncles travelled down to come which is something we wouldn’t have been able to do without the Butterfly Suite.” 

The family also received a Memory Box from the Andy’s team, which Nicole described as “so thoughtful”. 

“The Memory Box honestly had everything you could want in there. There was a notebook and a little jar so we could write happy memories of Caitlin and put them in the jar. Then whenever we wanted, we could take them out and read them. There were around 20 pebbles with things on and some seeds to help grow a flower garden in her memory. We got a keychain with her name on and some Christmas baubles with Caitlin’s fingerprints on so you can still feel her. 

“You just thought of everything before we even had to. One thing I really loved was the hand and feet casts. It’s all the little things that you would never have had a chance to get if you were at the hospital.

“Caitlin-Jade was very close to mum and her two sisters, and she is very missed but with the hospice’s help we have lots of precious memories of her and beautiful keepsakes. We will forever be grateful for their support through the toughest time of our life.” 

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