Hannah’s House is a dedicated paediatric service caring for children and young people from birth to 18 years. A distinguishing factor among the children we support is the presence of a progressive or life-limiting condition that causes complex daily care needs or necessitates palliative care.
There are estimated to be up to 2500 children and young people with a life-limiting or life-threatening condition in Western Australia aged 0-18 years.
Life-limiting conditions (LLCs) are those for which there is no reasonable hope of cure and from which children will often die before they reach adulthood. These conditions can vary and include a diverse range of rare conditions and health disorders including:
These conditions can be broadly categorised into four groups:
Life-threatening conditions for which curative treatment may be feasible but can fail.
Access to palliative care services may be necessary alongside attempts at curative treatment and/or if treatment fails.
(Examples: cancer or organ failure).
Conditions where premature death is inevitable.
There may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities.
(Examples: cystic fibrosis, Duchenne muscular dystrophy, cardiovascular anomalies).
Progressive conditions without curative treatment options.
Treatment is exclusively palliative and may commonly extend over many years. (Examples: neurodegenerative disorders, progressive metabolic disorders, muscular dystrophy).
Irreversible but non-progressive conditions causing severe disability, which leaves the child susceptible to health complication
Children can have complex health care needs, a high risk of an unpredictable life-threatening event or episode, health complications and an increased likelihood of premature death.
(Examples: severe cerebral palsy, multiple disabilities, brain or spinal cord injury).
The diagnosis is only part of the process of identifying children who need support from palliative care services; the severity of their illness along with the care needs of the child and impact on the family also need to be considered.
Sadly, illness progression for children with life-limiting conditions or complex disorders is often uncertain, and this uncertainty can cause significant distress for children and their families.
It is vital for children and families to be supported on their journey which may be days, weeks, months or years. Being connected to the Palliative Care Service at Perth Children’s Hospital and community-based services like Hannah’s House helps ensure quality of life for the child and support for the whole family.