A mother in Sydney, Thuy Linh Phan, is engaged in a dispute with a hospital that plans to withdraw life support from her seriously ill seven-month-old son, Liam. The baby was recently diagnosed with SMARD1 (Spinal Muscular Atrophy with Respiratory Distress Type 1), a rare and fatal inherited disorder, and his parents are seeking more time with him and further medical opinions before any irreversible decision is taken. The case matters because it highlights the painful conflict that can arise between parents and clinicians over end-of-life care for terminally ill infants.

SMARD1 causes severe muscle weakness and breathing problems in babies, has no cure, and carries an average life expectancy of under 13 months. Liam was born six weeks premature weighing just 1.35kg and has spent much of his life in and out of hospital. Doctors have concluded that the burdens of continued treatment now outweigh the benefits and intend to switch off his ventilator, but Ms Phan and her partner Hoang have requested greater transparency and the chance to explore all available care options. Ms Phan has vowed to keep fighting for her son.