“I’ll meet you at Callum’s bench” is something you often hear at The Ark. Although, it’s more than just a place to meet. It’s somewhere to reflect and remember Callum and the joy he brought to the world.
Ingride remembers when Callum was born: “My first few moments with Callum were just unconditional love, after months of waiting and then to see his perfect little face, those were amazing moments.”
Ciaran remembers Callum’s sunny disposition: “He was so joyful all the time, even with all the stuff he went through he was so happy. He loved attention and being around people.”
Ingride agrees, adding that the nurses called it the ‘Callum Effect’, “no matter what mood you were in, you were in a better mood after seeing Callum”.
In July 2022, when Callum was four months old, Ciaran and Ingride’s world turned upside down when a tumour was found in Callum’s kidney and they were rushed to Great Ormond Street Hospital. Devastatingly, the tumour was a very aggressive type of cancer – a malignant rhabdoid tumour of the kidney. A full body scan revealed that Callum had a further two tumours in his brain.
Callum was given active treatments, and his symptoms were managed, but sadly his condition wasn’t one that could be cured. The Whittington Hospital, one of Callum’s care providers, referred the parents to us in September 2022. Callum had undergone a procedure to relieve the pressure on his brain which made him less responsive to stimuli so our Sensory Room was an oasis for Callum where he could enjoy the lights, sounds and movement and his parents could enjoy his heightened responsiveness.
Callum also received support from Beth, our Music Therapist, and they formed a very special bond. His Mum says that Callum loved music therapy and really connected with music. Ingride talks about the support they received saying: “Noah’s Ark allowed us to have that time with Callum and not be bombarded with admin and just be with him while we could.”
Callum came to The Ark for end-of-life care at the end of February 2023 and we welcomed their extended family for nearly three weeks. Ciaran’s Mum, Dad and brother, Ingride’s Mum and two sisters and their families all came to support the couple and say goodbye to Callum.
Callum died on the 5th March 2023, aged 11 months. Beth played the lullaby that she had written for Callum as he was transferred to the Butterfly Suite for care after death. Ingride was reassured that the room was just like a child’s nursery and had been decorated with personalised items just for Callum.
The couple both struggle talking about this period with Ciaran reflecting: “To take yourself back to those moments, it’s not the easiest.” Ingride agrees saying: “Losing a child is something you can never come to terms with, you just have to take it day by day. But we’re grateful for the time we did have with him.”
Since Callum’s death the couple have continued to be supported by their Family Link Worker, Jo, as well as Carys, our Bereavement Support Co-ordinator. Carys explains Noah’s Ark’s role after a child dies: “We provide a second home, a place to be supported, comforted and looked after.” Ciaran agrees saying: “I always felt like they were there to support us.”
The couple are now expecting another child and are experiencing complex feelings around the pregnancy. Ingride says: “Being pregnant again is wonderful but with grief there is always mixed emotions, being really happy and sad that they won’t have their brother.” Ciaran add: “This joyful thing is tempered with grief. Knowing we won’t have those moments where Callum gets to meet his younger sibling. It does add pain to it, but it is a wonderful thing to be welcoming a new child. Callum will be a part of them, and they will be a part of Callum.”
The family are very much still a part of The Ark, Callum has his bench and his own ornamental butterfly, inscribed with his name, nestled in our garden. The family still visit regularly, Ciaran says, “It feels like a very special place for us to come and connect to Callum and feel his presence.”
The family are active fundraisers for our hospice with Ciaran’s family in Ireland organising a special fundraising walk called ‘Carry a Teddy for Callum’ to honour his memory. Supported by Callum’s parents, grandparents, family and friends, as well as their local community, the group raised over £7,000 for Noah’s Ark Children’s Hospice.
Jo says: “We say Callum’s name a lot and keep his memory alive in that way”, adding “when a family is a Noah’s Ark family, they have us and they will always have us.”
When you have the privilege to care for children like Callum they leave their mark. He’s still thought of, his name is still said and his presence still very much felt.
Callum – 23.03.22 – 05.03.23
With grateful thanks to Ciaran and Ingride for allowing us to share their story.