Trisomy 21 with complex cardiac anomalies complicated by pulmonary hypertension, chronic lung disease and recurrent respiratory infections
AI-generated summary
Baby G, born with Trisomy 21 (Down Syndrome) and complex cardiac anomalies, died at Royal Darwin Hospital on 18 March 2023 aged 6 months. The coroner found that non-invasive prenatal testing (NIPT) should have been offered to his mother during pregnancy; detection would have enabled planning and support. Baby G's parents, isolated from community supports while managing his complex needs, struggled with alcohol use in late 2022. Territory Families intervened with child protection notifications based on unsubstantiated concerns including suspected FASD (not medically evidenced). The coroner found Territory Families failed to: investigate thoroughly before screening notifications; provide family support services; refer to Down Syndrome Association peer support; secure housing; progress AOD rehabilitation; or conduct proper safety planning. Provisional Protection was enacted with a direction that parents leave the hospital—later conceded by Territory Families as unnecessary and harmful. The coroner concluded that while death was not preventable, earlier detection of Trisomy 21 and robust family support services would have substantially improved outcomes for Baby G and his parents.
AI-generated summary and tagging — may contain inaccuracies; refer to original finding for legal purposes. Report an inaccuracy.
Specialties
neonatologypaediatricscardiologyrespiratory medicineobstetricspublic health
failure of Territory Families to conduct thorough investigation into child protection notifications
failure to identify and acknowledge family strengths
failure to provide family support services despite policy requirements
failure to refer to Down Syndrome Association peer support
failure to secure appropriate housing for family
failure to progress alcohol and other drugs rehabilitation referrals
failure to conduct genuine safety planning with parents
inappropriate and traumatic enactment of Provisional Protection with direction to leave hospital
parents' emerging alcohol use in response to stress and isolation from community supports
parental isolation from family and community supports
inadequate accommodation and respite care planning
severe pulmonary hypertension
severe chronic lung disease
recurrent respiratory infections
feeding difficulties
COVID-19 infection during hospitalisation
Coroner's recommendations
NT Health promote the Australian Pregnancy Care Guidelines with all health practitioners
NT Health, in consultation with Miwatj and other appropriate Aboriginal health care providers, consider how and in what circumstances NIPT testing can be made freely available to pregnant women, particularly those in remote locations, and make all reasonable endeavours to secure funding for and facilitation of the provision of free NIPTs where identified as appropriate
NT Health and Territory Families work together with the Down Syndrome Association (NT) to ensure that staff working with children are aware of the available services and referral pathways to that Association
The Attorney-General consider a reform of the Care and Protection of Children Act 2007 (NT) to include the principle of 'active efforts' similarly to NSW provisions
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