The MCH supports Ruslinda (right) and her family by helping them look after Khaira (centre) who has aicardi syndrome. — RUSLINDA SABTU
KHAIRA Adifa Kamarulazmi is only five and her name will go down in history as the first patient at Malaysian Children’s Hospice (MCH), the country’s first children’s hospice, located in Kuala Lumpur.
The MCH was launched last month by the Malaysian Association of Paediatric Palliative Care (MAPPAC), offering free services for children under 18 who require medical care for serious, complex and often terminal illnesses.
The MAPPAC was formed in 2018 by a group of medical professionals, non-medical volunteers and parents. This non-profit organisation aims to increase public awareness on the importance of palliative care for children.
Palliative care is a specialised medical care for individuals diagnosed with a serious illness, focusing on providing relief from the symptoms and stress of the condition.
Khaira Adifa has aicardi syndrome; she was born without corpus callosum – the nerve tract which links the two halves of the brain. The disorder has resulted in malfunctions in Khaira’s brain, eyes and other organs of her body.
Khaira’s mother Ruslinda Sabtu, 34, says MCH is a beacon of hope for families like hers, that are grappling with the realities of caring for a child with a terminal condition.
“Khaira has many health complications, including spinal deformity. While she may look normal, she can’t walk or talk due to her disability. Despite these challenges, I have to remain strong to provide the best possible care for her,” said Ruslinda in a Zoom interview from her home in Subang Jaya recently.
Respite care is aimed at helping parents obtain home health, to prevent eventual burnout, family dysfunction and disharmony, says Dr Lee. — DR LEE CHEE CHAN
Coordinating therapies
For many parents with terminally ill children, MCH can assist in coordinating medical treatments and therapies. For Ruslinda, this include supporting caregivers and giving comfort to children with life-limiting conditions.
“I have been able to remain emotionally strong because of the support from the staff of Hospital Tunku Azizah (where Khaira goes for her check-up) and MCH. I feel comforted knowing that I am not alone in this journey, especially during the most challenging times in caring for my daughter,” said Ruslinda, who quit her job as a sales manager in a logistics company in Klang in 2018 to look after Khaira.
The MCH operates on the second floor in a rented space at Pusat Komersial Jalan Kuching. The 130 sqm space is a facility that offers support services to families of children and young adults who are facing life-limiting or life-threatening conditions.Services include children's palliative care, respite care and bereavement support to help families cope with their loved one's illness and loss.
The MAPPAC president Dr Lee Chee Chan said the centre is designed to provide holistic care encompassing physical, emotional and spiritual support.
“We provide clinical service to children being referred from hospitals for regular home visits, telephone communications and medical equipment loans. We also offer counselling and psychotherapy for patients and their family members,"
“The focus on respite care is to help parents obtain home health and hopefully, prevent eventual burnout, family dysfunction and disharmony,” shared Dr Lee, who is a paediatric palliative paediatrician at Hospital Tunku Azizah.
The newly-launched MCH is designed to provide holistic care encompassing physical, emotional, and spiritual support. — KELVIN CHUNG
Respite service
According to Dr Lee, some 80,000 Malaysian children will require paediatric palliative care (PPC) at some point of time in their life. Of these numbers, nearly a third will require specialised PPC service. Currently, MCH has five patients.“At the moment, most of the places to care for children in their last few days would be either in hospital or at home. For now, there is no formal respite service for their caregivers in Malaysia.
“Children's hospices work in collaboration with other healthcare providers to ensure continuity of care. They assist families and transition between care settings. This coordination helps alleviate the burden on families, ensuring that the child's care is well-managed and consistent,”
Depending on the various phase of illness, these children would need good palliative care symptom management and an understanding of their disease and treatments, Dr Lee added.
“They need a chance to voice out their psychological issues including the fear of death. Many patients continue to have learning activities despite their illness, if their cognitive development is still progressing.”
In the last five years, Dr Lee and his team have created public awareness on paediatric palliative care, while organising fundraising activities for MAPPAC.
“We had two successful events last year – the National Conference of Children Palliative Care Malaysia and a bazaar to raise funds for MCH. It is MAPPAC’s dream to launch our very own children’s hospice by 2030, which will cost about RM10mil. We can never stop advocating MAPPAC and the need for children’s hospice as we continuously depend on public donations and support to stay afloat.”
The Malaysian Association of Paediatric Palliative Care is offering training programmes in July, August, November and December for volunteers who are passionate about children's palliative care. For more details, go to www.mappac.org.
