Prime Minister Tony Abbott has officially turned the sod at the site of Hummingbird House, a purpose-built children’s hospice which will provide 24-hour paediatric palliative care in Queensland. Jessica Mewburn writes.
Baby Kate was born on 9 December 2008 with a congenital cardiac defect known as Tetralogy of Fallot. Fiona and Mark Engwirda knew from their 19-week scan that Kate had this condition, but with open-heart surgical repair she was expected to develop normally.
Unfortunately, this was not to be. At 12 weeks of age Kate developed seizures and was diagnosed with microcephaly—small head and brain.
“As a result she suffered severe epilepsy, respiratory difficulties and regular episodes of apnoea where she would stop breathing … The first 18 months of Kate’s life was spent bouncing in and out of hospital,” says Fiona.
On Kate’s first birthday she was deemed “palliative” and it was clear she would not grow up. With no respite options for families like theirs in Queensland the Engwirdas travelled to Bear Cottage in Sydney. The facility is a specialised paediatric hospice that provides families with respite in a warm home-like environment.
“As soon as I arrived back in Brisbane, I was convinced we needed one of these facilities here,” says Fiona.
With Paul and Gabrielle Quilliam, who run the charity Queensland Kids, Fiona and Mark began to lobby for a facility like Bear Cottage in Queensland. Tragically in 2011 Kate passed away on Fiona and Mark’s second visit to Bear Cottage.
“By chance we were surrounded by the beautiful staff and surroundings of a place that specialises in paediatric palliative care. The facilities allowed us to have Kate located posthumously in what is known as a ‘cool room’; this room is decorated and furnished beautifully like a child’s bedroom … This gave our family valuable time to do and say all that we needed to.
“There is no place to do this in Queensland.
“I am excited to know that thanks to Wesley Mission Brisbane and the creation of Hummingbird House, this opportunity will now be granted to the thousands of other families in our position every year.”
A joint project of Wesley Mission Brisbane and Queensland Kids, Hummingbird House will provide respite care to more than 3700 Queensland families who have a child living with life-limiting conditions.
Wesley Mission Brisbane Executive Director Geoff Batkin said Wesley Mission Brisbane is incredibly proud to allocate the land and come on board as the clinical service provider for Queensland’s only children’s hospice.
“Hummingbird House will change the lives of children with a life-limiting condition and their families in a profound way,” he said.