Baby G coronial inquest recommends free Down Syndrome blood tests for all pregnant Territorians

A loving and doting Territory mother was unable to be by her baby boy’s side in his dying days due to ‘fanciful’ and unfair reports by a bureaucratic government agency.

The Territory coroner recommended that NT Health should freely provide the non-invasive, prenatal blood tests for all pregnant women in the Territory. Picture: uStock

A baby boy who spent the entirety of his 190 days on Earth in a hospital ward was taken from his “loving and doting” mother following ‘fanciful’ and unfair reports from child protection agencies.

In December, Territory coroner Elisabeth Armitage released five recommendations to NT Health and Territory Families following the death in care of a Yolngu boy with Down syndrome, known as Baby G, on March 18, 2023.

Ms Armitage said his parents had “no warning and no preparation” for their son’s serious medical issues, as he was only diagnosed with Down syndrome after his birth despite simple prenatal blood tests being recommended for all pregnant Australians.

Baby G’s parents, Camilla Yunupingu and Brendan Ganambarr Mandanbuy, travelled to Darwin and then Adelaide as their little one was treated by specialists for serious health complications including severe and progressive lung disease, a pulmonary hypertension, a hole in his heart, feeding difficulties, severe global developmental delay, glaucoma, cataracts, and a blood disorder.

Artwork depicting Baby G's totem the butterfly, provided by his family and reproduced with permission.

Despite Camilla being described as a “loving and doting” mother who was often singing and cuddling her baby, child protection authorities started circling.

Ms Armitage found Territory Families applied to remove him the day after his birth, after reports confused his “suspicious facial features” as evidence of Foetal Alcohol Syndrome, rather than Down syndrome.

While she stopped drinking during her pregnancy, Camilla recorded as intoxicated three times in her three months on the Darwin ward including an incident where she fell asleep while holding Baby G and he slipped on the floor.

But Ms Armitage said Territory Families reports “readily inferred the worst of these parents” dealing with the stress of their child’s chronic health issues.

“There is no evidence other than that his parents rose to the challenge of his care,” she said.

“However, they were isolated from their community and family supports, coming to terms with the care requirements of an extremely ill and disabled child, and were subject to other family stressors.

“A fairer reading of the contemporaneous records indicates that there were many days when the parents were present and not identified as intoxicated. And concerns about intoxication were recent and emerging, rather than entrenched.”

Generic Imagery of Royal Darwin Hospital. Picture: Pema Tamang Pakhrin

Indeed, hospital notes said Carmilla was an attentive and caring mother, talking and singing to her dying son, and filing applications to secure housing in Darwin — none of which were actioned by Territory Families.

“It is a perverse line of reasoning if a substantial cause for Provisional Protection being enacted is Territory Families own failure to identify and deliver family support services that, if provided, may well have obviated the need for protection.”

Ms Armitage said “grossly unfair” reports by Territory Families accused the parents of not engaging with the department, and used unrealistic, “largely fanciful” and unsubstantiated justifications to progress Baby G’s removal.

She said “seemingly with little regard” for the distressed parents, Territory Families told them about a looming ‘safety plan’ while they were in isolation after Baby G tested positive for Covid.

Ms Armitage said it was “inexcusable” no support or planning consultation was offered, and the meeting without an interpreter or family support was “the antithesis of trauma informed practice”.

Just eight days later the Department handed them an Interim Protection Order and Camilla and Brendan were told they “needed to leave” and to “say goodbye” to their dying son, despite saying “they had nowhere to stay” and “no money”.

The next day the Local Court dismissed the protection order, finding any concerns about the caring and attentive parents could be addressed through “high quality and high intensity support”.

Coroner Elisabeth Armitage outside Darwin Local Court. Picture: Zizi Averill

But following the stressful and traumatic 48 hours, Baby G’s “struggling and overwhelmed“ parents appeared to disengage and were increasingly missing from the hospital ward.

A third protection application was made, and on December 19 Baby G was placed in the care of foster carers who — unlike his parents — were provided support including respite care.

His parents were turned away at the hospital when they tried to visit, and had limited time with their child before he died at just six months old.

Following the three-day inquest, Ms Armitage recommended the Care and Protection of Children Act be reformed so agencies are required to take “active efforts” to provide support before removing kids from their families.

She also raised concerns over the delays in identifying Baby G’s Down syndrome despite simple prenatal blood tests being available, and that no one referred the family to the Down syndrome Association of the Northern Territory.

While the $400-$500 tests are not currently being covered by Medicare, Ms Armitage recommended NT Health should freely provide the non-invasive, prenatal blood tests for all pregnant women in the Territory.

Originally published as Baby G coronial inquest recommends free Down Syndrome blood tests for all pregnant Territorians