Esme and James Westmoreland spent days cradling their daughter Cecelia in a specialized care after death suite after she died at three weeks past her first birthday from a rare chromosome disorder. They gave her a cuddle, read a bedtime story, tucked her into bed, and kissed her forehead before saying goodbye in the cold room.
How Care After Death Suites Work
Care after death suites usually feature a living room with a television and sofa beds, basic catering facilities, and a separate cooled bedroom kept at a fridge-like temperature. The mattress includes additional cooling technology while staff handle practical care, giving families time to make memories and arrangements. Pilot James first toured one of these spaces seven months before Cecelia died, noting it felt cold like a fridge, while Esme described it as a cold bedroom where only a jumper was needed.
Raising Awareness of Children Palliative Care
Dr Michelle Hills, Chief Medical Officer at Martin House Children Palliative Care near Leeds, states that thousands of grieving families miss out on vital help due to the stigma surrounding children hospices. Dr Hills wrote a book titled The Wrong Order of Things to change perceptions and encourage struggling parents to ask for assistance. Esme initially felt reluctant to ask for help after Cecelia was diagnosed with 1.P36 deletion syndrome at six weeks old, a disorder causing up to 100 seizures a day.
Remembering Cecelia
Martin House Children Palliative Care, which counts Sir Gareth Southgate among its ambassadors, provided respite stays that allowed Esme and James to focus on being parents rather than medics. Cecelia passed away peacefully on Sunday, February 23, 2020, and was taken to the hospice Snowflake Suite for over two days. The family now speaks openly about their daughter with their other children, Albert and Audrey.
