SINGAPORE – Fourteen-year-old Dean Joachim Aszrin\u2019s rare genetic disorder (Cri du chat syndrome) resulted in his intellectual disability, developmental delays, and poor muscle tone. <\/p>\n
He needs specialised care and support for daily activities, such as feeding himself and moving around independently.<\/p>\n
Unable to cope with Dean\u2019s condition and two younger daughters, aged 12 and six, single father Mohd Aszrin Ahmad, 51, sought help from Dean\u2019s doctors.<\/p>\n
The teen was placed with Cocoon, SingHealth Community Hospital\u2019s (SCH) inpatient facility for paediatric palliative care at Sengkang Community Hospital (SKCH). There, for about four weeks, he would receive care from therapists and volunteers, along with comprehensive support for the entire family. <\/p>\n
Cocoon, which houses Singapore\u2019s only palliative paediatric facility at a community hospital, is a new four-year pilot programme led by KK Women\u2019s and Children\u2019s Hospital (KKH), to strengthen paediatric palliative care capabilities of all healthcare professionals, including general practitioners.<\/p>\n
While it does not handle end-of-life care for children, it aims to enhance the quality of life for young patients with chronic, complex medical conditions, and for their families and caregivers. <\/p>\n
Dr Cristelle Chow, a senior consultant from the General Paediatrics Service (Complex and Homecare Services) at KKH, said that while adult palliative care focuses particularly on end-of-life care, paediatric palliative care looks out for the families, caregivers, and children with life-limiting conditions such as cerebral palsy, cystic fibrosis, and various genetic disorders. <\/p>\n Mr Mohd Aszrin Ahmad and his son Dean Joaquim Mohd Aszrin in the Paediatric Care ward at Sengkang Community Hospital. Dean was placed under the Cocoon programme, where he receives holistic care and where therapists and volunteers engage him to support his development and well-being.<\/p>\n ST PHOTO: ARIFFIN JAMAR<\/p>\n<\/figcaption><\/figure>\n \u201cIt caters to the child\u2019s evolving physical, emotional, and developmental needs (as they move into adolescence and then into adulthood), and supports families in making challenging medical decisions,\u201d she said, adding that the focus would shift towards more complex medical care coordination and self-management skills. <\/p>\n The facility at SKCH has a total of eight beds for children up to 16 years old referred from KKH. Currently four of the beds are occupied, with average stays of up to four weeks.<\/p>\n The pilot service is the first structured programme tailored to children, \u201creflecting the growing commitment in delivering the best possible support throughout the child\u2019s illness\u201d, said Dr Xu Bangyu, medical director of SKCH.<\/p>\n Cocoon is expected to benefit more than 240 paediatric patients over its four-year duration. On its website, KKH says it cares for approximately 100 to 120 patients with severe neurological impairment and complex medical conditions each year. <\/p>\n It will also train healthcare professionals with support from the Lien Foundation.<\/p>\n \u201cChildren suffering is one of life\u2019s most disturbing realities. We want palliative care not just for dying children, but also that which relieves symptoms and stress of serious illnesses,\u201d said Mr Lee Poh Wah, chief executive of Lien Foundation. His charitable organisation has given $4.7 million to the programme, part of which helps to fund a new foundation certificate course equipping doctors, nurses, and allied health professionals with specialised training in paediatric palliative care. <\/p>\n Julian (not his real name) faced cognitive and physical challenges following a serious road accident. Under the Coccon programme, therapists, like Ms Jilene Lau, a physiotherapist, help with his mobility and engage him in games to help him regain independence.<\/p>\n ST PHOTO: ARIFFIN JAMAR<\/p>\n<\/figcaption><\/figure>\n Dr Michelle Koh, who heads the paediatric palliative care service at KKH, developed the three-day foundation course, conducted by KKH and accredited by SingHealth Academy. It deals with the principles and practice of paediatric palliative care, including holistic care, family support, and navigating conversations around serious illness, dying and death. <\/p>\n Dr Koh, who held key roles in Britain, including as consultant at Great Ormond Street Hospital and University Hospital Southampton, was motivated by what she saw, which haunts her till today \u2013 a distraught mother carrying a crying child in excruciating pain.<\/p>\n It drove her to develop and lead paediatric palliative care services at the University Hospital Southampton \u2013 a programme she duplicated at KKH and now SCH.<\/p>\n Since its launch in January 2025, the course has trained 55 doctors, nurses and allied health professionals across hospital and community settings. The fully subsidised course is aimed at training about 60 professionals a year, targeting a total of 200 by 2028. <\/p>\n A two-year graduate diploma developed by KKH, National University Hospital (NUH) and HCA Hospice, is also in the pipeline. <\/p>\n Julian doing activities with Ms Yang Ching Wen, an occupational therapist, at the Paediatric Care ward on Nov 4.<\/p>\n ST PHOTO: ARIFFIN JAMAR<\/p>\n<\/figcaption><\/figure>\n Separately, end-of-life care for children is offered at two major public hospitals specialising in children\u2019s healthcare.<\/p>\n The KKH Paediatric Palliative Care (PPC) team serves the hospital\u2019s cancer service and patients referred from a range of specialities, including the children\u2019s and neonatal intensive care units, cardiology, and neurology.<\/p>\n It also works closely with HCA Hospice\u2019s Star Pals team. HCA Hospice has supported 448 children under its Star Pals programme since its launch in October 2012.<\/p>\n At the Khoo Teck Puat \u2013 National University Children\u2019s Medical Institute NUH, the Paediatric Palliative Care Service (PPCS) provides family centred, multidisciplinary support for children with serious illnesses, starting from the prenatal stage through infancy and young adulthood. <\/p>\n Since its inception in late 2020, the PPCS at NUH has seen a steady increase in its patient numbers from 29 in 2021 to 53 in 2024, as more become aware of its services. <\/p>\n<\/div>\n<\/picture><\/div>
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