JENNY and Craig Butters understand the devastation and the anguish of losing a child all too well.
But through their own heartbreak, they have found a way to make that process just a little bit easier and a lot more comfortable for other families as they try to make precious memories with their loved ones.
Thanks to the Nicholas Trust Foundation - established by Mr and Mrs Butters after their 14-year-old son died of brain cancer in 2004 - and the Newcastle Permanent Charitable Foundation, a paediatric palliative care room at John Hunter Children's Hospital neonatal intensive care unit is providing a "home away from home" for parents with a terminally ill infant. The new $260,000 space offers privacy, comfort and dignity to families during an incredibly distressing time. It provides a more private location than the old NICU palliative care room it has replaced.
Mrs Butters said they wanted to give other families the room to "build beautiful memories", and to grieve.
"It is so important to have those final days together as a family to rebuild, to recover, and to have a place where you can share that with your family and your friends to be able to grieve together," she said. "It allows them to have some positive memories from an experience that is so sad and so tragic.
"We couldn't save Nick, but we could certainly make it a lot easier for other families that find themselves in that situation."
Over the years, they have raised in excess of $1 million for a variety of palliative care facilities and programs in Hunter New England.
Dr Paul Craven, the executive director of Children, Young People and Families for Hunter New England Health, thanked The Nicholas Trust and Newcastle Permanent Charitable Foundation for their ongoing generosity.
"This new space allows families some privacy, and allows them to still be in the safety of the Intensive Care Unit, but away from others," Dr Craven said.
"It has a double bed for parents, and it has all the intensive care equipment that they might still require in some situations, a small kitchenette and a bathroom as well. So it is just a really lovely space for families to be in a terrible time in their life."
Families would also have access to specialist staff who can provide round-the-clock support during their stay, and the space allows them to have their families, and other children, be with them during that time comfortably.
"The loss of a child is such a difficult thing for a family to go through, so being able to provide a space specifically designed to provide comfort, privacy and dignity is such a simple but powerful gesture," he said.
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