SINGAPORE – Fourteen-year-old Dean Joachim Aszrin’s rare genetic disorder (Cri du chat syndrome) resulted in his intellectual disability, developmental delays, and poor muscle tone.
He needs specialised care and support for daily activities, such as feeding himself and moving around independently.
Unable to cope with Dean’s condition and two younger daughters, aged 12 and six, single father Mohd Aszrin Ahmad, 51, sought help from Dean’s doctors.
The teen was placed with Cocoon, SingHealth Community Hospital’s (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.
Cocoon, which houses Singapore’s only palliative paediatric facility at a community hospital, is a new four-year pilot programme led by KK Women’s and Children’s Hospital (KKH), to strengthen paediatric palliative care capabilities of all healthcare professionals, including general practitioners.
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.
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.
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.
ST PHOTO: ARIFFIN JAMAR
“It caters to the child’s evolving physical, emotional, and developmental needs (as they move into adolescence and then into adulthood), and supports families in making challenging medical decisions,” she said, adding that the focus would shift towards more complex medical care coordination and self-management skills.
