Baby’s short life showed need for paediatric palliative care

By CathNews New Zealand

April 8th, 2025

(Wikimedia Commons)

With Starship Hospital losing its only paediatric palliative care specialist, a mother has reflected on her son’s short life, in which faith played a role. Source: The Spinoff.

Emma Gilkison’s son Jesús Valentino (JV) lived for 15-and-a-half days in 2014. He had been diagnosed with ectopia cordis, which meant his heart had grown outside of his chest, and he was expected to die at birth or shortly afterwards.

“ . . . A kind priest we knew had introduced us to a paediatric surgeon who had offered to volunteer his time and be on call when our baby was born,” Ms Gilkison wrote.

“He would apply a special dressing to protect his heart. He wanted to try using an enclosed plastic surgical bag to protect it, something which as far as he knew, hadn’t been tried before.”

A week after the baby was born, Ms Gilkison and her partner Roy, who hails from Peru, were able to take him out of hospital for “a big day out”.

“. . . We visited my Buddhist centre for chanting, then attended a Catholic Mass for All Souls’ Day,” she recalled.

“These were days of miracle and wonder. The opportunity to do things we’d never dreamed of with our baby was incredibly special. Our wider community was able to meet JV too. They would all be the keepers of his memory.”

When JV was a week old, the couple’s neonatologist requested that JV be admitted to Mary Potter Hospice.

“This was a much better environment for us to be in than the hospital.”

The baby died peacefully in his mother’s arms 15 days after he was born.

“All babies and children with a terminal illness deserve to die this way – with the people who love them best, comfortable and with the care they need,” Ms Gilkison wrote.

“Yet, the excellent palliative care our baby and family received happened in spite of, not because of, the hospital system. A health system with gaping holes in paediatric palliative care can’t show dying babies and children the love they deserve,” she added.

FULL STORY

Finding palliative care for our baby in a ‘luck of the draw’ health system | The Spinoff (By Emma Gilkison/The Spinoff)

Health NZ seeks feedback on care for dying children (Radio New Zealand)