Inquest into the Death of Child SJC (Name Subject to Suppression Order)

Inquest into the Death of CHILD SJC (Name Subject to Suppression Order)

Delivered on : 1 July 2020

Delivered at : Perth

Finding of : Coroner Jenkin

Recommendations : Yes

I recommend that as a matter of urgency, the Perth Children’s Hospital, supported by the Western Australian Department of Health, use every means at its disposal to lobby for Dinutuximab to be placed on the Pharmaceutical Benefits Scheme (PBS). I would also recommend that the Federal Minister for Health give favourable consideration to placing Dinutuximab on the PBS.

Orders/Rules : N/A

Suppression Order : Yes

Suppression of the deceased’s name from publication and any evidence likely to lead to the child’s identification. The deceased is to be referred to as “Child SJC”.

Summary : Child SJC died on 20 November 2017, from complications relating to metastatic neuroblastoma, an aggressive form of cancer that predominantly affects young children. At the time of her death, Child SJC was in the care of the Department of Communities (the Department).

Child SJC was born on 26 June 2015. Concerns were raised about the ability of her mother to care for her and Child SJC was placed on a 12-month supervision order by the Department. The order was subject to monitoring conditions and Child SJC’s mother appeared to be coping well and received positive reports about her parenting.

Following a review for a bruised eye, Child SJC was diagnosed with Stage IV high-risk neuroblastoma on 23 May 2016 during her admission to Princess Margaret Hospital (PMH). The primary tumour was identified in her right adrenal gland and secondary tumours were found in her liver, skull and the bones of her arms and legs. PMH staff encountered difficulties contacting Child SJC’s mother to obtain consent for various medical procedures and on 15 June 2016, Child SJC was taken into the care of the Department for a period of two years and placed in the care of her maternal great-grandmother.

Child SJC underwent an intensive treatment regime that included surgery, chemotherapy, radiotherapy and immunotherapy, and initially she responded well. She was discharged home on 10 January 2017, apparently in remission. However, Child SJC relapsed on 7 August 2017 and a right sided pelvic mass was detected along with tumours to the right groin, the lymph system at the back of her right knee and her skeletal bones and bone marrow.

The standard immunotherapy treatment regime for children with Stage IV high-risk neuroblastoma was treatment with Dinutuximab, which was made available free of charge to PMH by a company in the United States of America as part of a world-wide clinical trial. However positive clinical trials caused a surge in demand for the substance, and in late November 2016, the American company announced that it would no longer be made available to patients outside the US. In collaboration with other children’s hospitals around Australia, PMH sourced supplies of an alternative known as Dinutuximab Beta. PMH then obtained approval to purchase this substance until Dinutuximab became available again.

Although Child SJC’s treatment with chemotherapy and Dinutuximab Beta began on 10 August 2017, her tumours continued to grow and the treatment was ultimately unsuccessful. Indeed, scans on 6 October 2017, showed there had been no response to this treatment and Child SJC’s tumours continued to progress. Child SJC underwent palliative radiotherapy, primary to control pain.

On 7 November 2017, a new mass was noted Child SJC’s jaw and her condition began to deteriorate. Further tumour deposits were found in her jaw and knee when she was reviewed on 15 November 2017 and on 17 November 2017, it was felt her death was imminent. Child SJC was surrounded by her family when she died on 20 November 2017.

The Coroner was satisfied the care, supervision and treatment provided to Child SJC by the Department was of an acceptable standard. The Coroner made one recommendation relating to the supply of Dinutuximab.

Catch Words : Neuroblastoma : : Availability of Dinutuximab : Child in Care : Comment on Care, Treatment and Supervision : natural causes

Last updated: 3-Mar-2021

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