Canavan Disease: The Journey of Two Siblings

Provision of paediatric palliative care is complex and covers meeting the individual needs of children and their families through a life limiting illness. This unique case report tells the journey of two siblings with Canavan disease which is a progressive and fatal genetic disorder.  In this report the patients’ mother is a single parent and primary carer. The older sibling died at three years of age in 2016 and the second sibling recently turned three.

The aim of this case report is to look into parental needs and wishes about wanting similar or different medical care to be provided to siblings with similar life limiting illness. The case report also aims to provide insight into parental anticipatory grief especially when having two siblings with similar life limiting illness. It looks at challenges the Paediatric Palliative Care team face in trying to facilitate parental wishes surrounding goals of care and end of life care discussions.

With the consent of the mother, retrospective review of medical records of the two patients was conducted. The results are narrated as two individual stories and the discussion is presented together. As Canavan disease is a rare disease, there is a risk of identification and hence names of the individuals have been modified to protect their privacy.

This descriptive case report aims to provide an in-depth exploration of the lived experiences of a parent who has cared for and continues to care for another sibling with a life limiting condition. Responses highlighted the challenges of parental decision-making efforts and parents’ advocacy regarding their child's needs. Health care professionals need to understand parental worries, losses, parent child-relationships and coping strategies. As paediatric palliative care continues to evolve, experiential studies are important to provide a better understanding of the caregiving experience in this setting.