Focus Topics

topic 3 | Activity 3: Emily’s story

Emily is a 10-year-old girl who was diagnosed at birth with a congenital heart defect. Her parents were informed soon after birth she had Hypoplastic Left Heart Syndrome. The Paediatric Cardiology Team were involved in Emily’s care upon diagnosis. Emily was not suitable for a heart transplant according to the national criteria. Emily had numerous reconstructive surgical procedures until the age of nine when Emily’s condition deteriorated and further surgical procedures were not possible.

Emily lives with her parents and younger siblings on a cattle property in rural Australia. Emily’s parents work on the property and Emily’s mother has recently obtained work in the nearest town to assist the family financially.

  1. Identify the stressors that Emily’s parents might currently be dealing with:
    • Physically
    • Psychosocially
    • Financially
    • Spiritually.
  2. What are Emily’s current physical concerns?
  3. Identify the additional concerns for children with a life-limiting illness and their families who live in rural and remote areas.