Esme and James Westmoreland spent just over two days with their daughter after she died, using a specially cooled room at a children's hospice to hold her, read stories and say goodbye. Their experience at Martin House Children's Hospice in Yorkshire has drawn attention to cooling rooms, a form of bereavement support that allows families more time with a child after death.

Cooling Rooms Give Parents Time

Cecelia died aged 13 months after living with 1p36 deletion syndrome, a rare chromosome disorder. The condition affected her brain, heart and other organs, and she experienced up to 100 seizures a day. She had received support from Martin House, which cares for children with life-limiting conditions and their families.

After Cecelia died at her grandparents' home on 23 February 2020, she was taken to the hospice's Snowflake Suite, its name for a Care After Death facility. Her parents stayed for just over two days. The room allowed them to remain close to her while staff helped with practical arrangements following her death.

Esme said the time together was important, giving both parents space to begin to understand what had happened. They held Cecelia, read to her and took cuttings of her hair. She acknowledged that being with a child whose body had become cold was difficult, and that the option would not suit every family.

Cooling equipment slows physical deterioration, allowing a child to remain with relatives before transfer to a funeral director. Some facilities also provide a separate living area for family members.

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Why Specialist Bereavement Care Matters

Martin House says its cooled bedroom can allow a child to remain at the hospice for up to five days after death, giving family and friends time to visit. Staff can also help with funeral arrangements. The service forms part of a wider model of children's hospice care that supports the whole family, not only a child's medical needs.

Dr Michelle Hills, chief medical officer at Martin House, says many families do not know such facilities exist. She says hospices can offer a calm opportunity to say goodbye without the lines and machines associated with intensive medical care. Some families bring siblings or the family dog to help them understand what has happened.

The approach is not suitable for everyone. Some parents may prefer to leave soon after a death; others may value more time in a familiar setting. The choice depends on individual needs and should not be treated as a prescribed stage of grieving.

A 2021 study by researchers Julia Hackett and Bryony Beresford surveyed 52 UK children's hospices, 41 of which responded. It found significant variations in cooling facilities, how long families could use them and which families were eligible for access.

The researchers also identified challenges for hospice staff, including managing physical deterioration after death and supporting families who had not previously used hospice services.

A Choice, Not an Expectation

The Westmorelands have spoken about Cecelia with their younger children, who know they have an older sister who died. They have backed efforts to make conversations about children's palliative care, death and grief less difficult.

For Esme, the hospice cooling room kept practical decisions away from the family home, leaving that space associated with memories of Cecelia. The experience does not remove bereavement's pain, but shows why some families value time to say goodbye. It remains a personal decision.

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Frequently Asked Questions

  • What are cooling rooms in children's hospices?
    Cooling rooms are specially cooled facilities in children's hospices that allow families to spend more time with their deceased child before transfer to a funeral director.
  • Why are cooling rooms important for bereaved families?
    Cooling rooms provide families with the opportunity to say goodbye in a calm environment, away from medical equipment, and allow them to make practical arrangements without immediate pressure.
  • How long can a child remain in a hospice cooling room?
    At Martin House Children's Hospice, a child can remain in a cooled room for up to five days after death.
  • Are cooling rooms suitable for all families?
    No, the suitability of cooling rooms depends on individual family needs and preferences. Some families may prefer to leave soon after a death, while others may value more time in a familiar setting.