Penny and her husband Andrew, from Ipswich, were parents to Samuel Revitt. Samuel had complex health and care needs and the family received care and support from the EACH Treehouse hospice for a number of years. In February this year Samuel sadly died at the Treehouse after being transferred from Addenbrooke’s Hospital in Cambridge.
Sam was born in October 2011, Penny and Andrew’s only child. He was a happy, contented smiley boy who loved being with people and really enjoyed interactions. He would shout out to those he knew who did not say hello to him, and he could give a Paddington bear stare if he was upset with you. He formed meaningful and solid friendships with his peers and many others both at school and in his church family at St Matthews in Ipswich.
From his first year Sam developed complex needs due to Dravet’s syndrome. This resulted in epilepsy and delayed development, and prevented him developing sitting balance and thus the ability to walk. Sam required 24 hour care from his parents.
The Treehouse team at Ipswich provided respite care for the family, and Sam loved his daytime stays. He could get up to all antics involving paint and the like. He loved a bath in the EACH big bath along with music and stories. Another aspect of the Treehouse’s support that Sam loved was their music therapy service. He was the only child who would be alert at the end of an online ‘lullaby night’ when all the other children were sleepy. He had seen his friends so he was happy.
During late 2021 and early 2022 Sam had a number of hospital admissions for chest infections. These periods of hospitalisation involved transfers between Ipswich hospital and Addenbrooke’s plus one trip to Great Ormond Street in London all facilitated through PaNDR (Paediatric and Neonatal Decision Support and Retrieval Service).
In late January Sam was finally transferred to Addenbrooke’s. With high levels of support and oxygen, he was not recovering his strength and it became clear to the medical staff and his parents that his journey of life was coming to an end. Alongside the ward staff and consultants, the palliative team at Addenbrooke’s along with EACH staff helped Penny and Andrew through this difficult stage of Sam’s life, supporting them through the difficult decisions and working with dedication to enable his final transfer to the Hospice in Ipswich.
Andrew recalls:
It felt like everything lined up – the efforts of the palliative care team to get us to a hospice, the PaNDR team going out of their way to ensure we could get Sam transferred safely, the Hospice team going to extra lengths to accommodate us, and the nurses and doctors (and Sam) ensuring he was well enough for a transfer to be possible.
Andrew Revitt
Although Sam only had one night at the Treehouse, this made all the difference to Penny and Andrew. They were able to be visited by close friends, and to relax and be with Sam in a comfortable and welcoming environment. The Treehouse staff were able to ensure Sam was comfortable in his last hours, and to provide reassurance and compassion to Penny and Andrew.
Penny writes
In our Palliative care journey, genuine kindness was shown to us as we made the most difficult of choices to stop active treatment and begin end of life care. It’s a decision no parent wants to make but a whole range of people and teams pulled together to make it possible for Sam and us to be in a home from home for those final 16 hours of his life.
Penny Revitt
Sam died on the 5th February 2022 and both Penny and Andrew are grateful for all the support they have and continue to received as they remember a boy with a big heart, a wide smile and a cheeky giggle.