Redlands family heartbroken as infant son placed into palliative care

A six-month-old boy’s shock diagnosis just before Christmas has devastated a South East Queensland family and left them grappling with the heartbreaking dilemma of how to share the tragic news with his doting three-year-old sister.

The Gray family. Picture: Hannah Photography

A Redlands family has been handed the most devastating news just before Christmas, that their newborn has to be placed into palliative care following a shock diagnosis.

In the months following the birth of their son, Kye, in April last year, Louise and Dave Gray became concerned he wasn’t hitting the same milestones his three-year-old sister, Eva, had hit just a few years before.

“He didn’t smile or anything like that at the six-week point,” Mrs Gray said.

“After completing blood tests, our private pediatrician thought it was just a vitamin B deficiency.”

Mrs Gray said signs of fatigue also gave them cause for concern, with even everyday activities for a baby proving challenging for Kye.

“He has issues producing energy and doing movements,” Mrs Gray said.

“After two hours he is exhausted and will fall asleep.”

Kye and his sister Eva. Picture: Hannah Photography

The parents decided to seek a second opinion and were able to get an MRI at Queensland Children’s Hospital in early November.

“We thought it would just be 45 minutes, so we went to get a coffee … and it ended up taking two hours,” she said.

The hospital got in touch with them that afternoon, asking them to come back the following morning.

At the appointment, Mrs Gray noticed a social worker was also present.

“We knew the social worker was not for Kye … they were there for us,” she said.

Kye was diagnosed with Leigh’s Disease, a neurological disorder with a life expectancy of just a few years.

He was immediately placed in palliative care, with the metabolic team at Mater managing his quality of care at least once a month to ensure he’s not in pain and comfortable.

The family has a social worker on call to talk through any difficult conversations with Eva. Prior to the diagnosis, Kye had specialist appointments including speech therapy and physio, which Mrs Gray says hasn’t changed.

Kye was placed into palliative care in early November. Picture: Supplied

Adding to the tragedy of Kye’s diagnosis, the family found themselves grappling with the loss of their dog, shortly after.

Mr Gray said that while sad, the loss of their dog at least provided them with an opportunity to prepare for the inevitable conversation about Kye with Eva.

“We talked about what happened [with] Eva, to help prepare for when we need to tell her about Kye,” Mr Gray said.

“She has been asking when Kye is going to walk or crawl … and when he is going to come to the baby room at the daycare.

Eva doting on her younger brother. Picture: Supplied

“She was very excited when he was born. She loves constantly bringing toys to play with him and cuddling him.”

At the end of 2022 the parents purchased a new home to support their growing family.

“We had to do a lot of renovations and spend money we didn’t realise we needed,” Mrs Gray said.

“I’m going to stay with Kye as long as he needs me.”

You can support the Gray family on GoFundMe.

Originally published as Redlands family heartbroken as infant son placed into palliative care