Spina Bifida Awareness Workshop 2022 – JOHOR

The Global Grant Launch is a project proposed by SiBIAM and DASH on 31st July 2021 with the aim to:

  1. Raise awareness about Spina Bifida and empower healthcare professionals (HCP) and special needs teachers to be able to care for SB needs
  2. Enhance knowledge and provide training to key HCP, rehabilitation personnels, occupation therapists and teachers in SB-related care and to encourage provision of combined multidisciplinary clinic services to ensure coordination and timely intervention and management of SB.
  3. Encourage networking and linkage between SB families and HCP to establish local “service centres” as extension of SiBIAM that will provide information, encourage peer support and connect to appropriate medical and social services, whilst also serving to compile local data which later can be used for resource allocations and policy matters.

In Phase 3 of the Global Grant Launch, 1-day workshop which aims to create awareness and educate parents, caregivers, teachers and the public about SB would be held nationwide. Following the first workshop held in Seremban, we are proud to announce that our second workshop will be held at Hospital Sultan Ismail, Johor Bahru.

On October 26th 2022, Hospital Sultan Ismail Johor Bahru hosted a Spina Bifida Awareness course. This course was attended by healthcare professionals from all districts in Johor. There was a special track for people living with spina bifida and their families. Dr Surya Binti Marsom, Deputy Director of Hospital Sultan Ismail (HSI) officiated the event. She expressed her thanks to the Department of Rehabilitation Medicine HSI, Spina Bifida Association of Malaysia (SIBIAM), District Action Group for Spina Bifida and Hydrocephalus (DASH) and Rotary Clubs of Kluang and Pasir Gudang Mandarin in Rotary District 3310 for their advocacy efforts and great teamwork.
The one day event was attended by 159 healthcare providers comprising doctors, nurses, therapists and 30 spina bifida patients and their family members from all Johor districts. There were 3 Rotarians present from the Kluang and Pasir Gudang Rotary Club. SIBIAM president, Professor Dr Amaramalar Selvi Naicker-Naysaduray emphasized that people with Spina Bifida need holistic healthcare, accessibility, education and job opportunities. DASH chairperson, Ir Dr Kribanandan G N of Rotary Club of Damansara in Rotary District 3300, envisaged that stronger networks can be built between healthcare providers, Rotarians and the community to create greater awareness about Spina Bifida. District Governor Joanne Kam of Rotary District 3310 gave a message of support to all the participants of the event.
There was a comprehensive series of lectures by a multidisciplinary team of specialists. Dr Tajul AriffinTajudin, Paediatric Neurologist explained that spina bifida is a birth defect that occurs when the spine and spinal cord do not form properly. Dr Sharon Casilda Theophilus, Neurosurgeon shared about the surgical repair for a baby born with spina bifida and management of hydrocephalus where there is excess fluid in the brain. Dr Fadli Miskon, Foot & Ankle Orthopaedic Surgeon spoke about foot deformities that can occur as a complication of spina bifida. Dr Chern Phei Ming, Rehabilitation Physician shared her experience on the rehabilitation program required for children with spina bifida. Mr Ng Chao Feng, physiotherapist demonstrated some home exercises that were beneficial for people with spina bifida. Ms Chong Chin Weun, dietician shared on healthy diet tips. Pn Siti Jamilah Samsuddin Johor Deputy Director of Special Education explained about education options while En Abu Umamah Abd Rahim from Human Resource Development Corporation spoke about training programs.
Among the highlights of the day were the interactive games and the education session for children with spina bifida. Dr Sharon Anne Khor, Johor Head of Rehabilitation Medicine Services, conducted a moderation session for children with spina bifida and their parents. The children unanimously agreed that they had learnt a lot from the teaching sessions. One young boy stated that the demonstration of bladder catheterization by Paediatric Nurse Goh on the mannequin made him more confident in doing self-catheterization. Some of the children shared about the challenges they face in school such as coping with lessons while having to manage their bladder and bowel. They also expressed hope that people will treat them as equal.
A teenage girl enjoyed school so much that she sometimes forgot she was on a wheelchair. Mr Muniandy, a parent expressed hope that these support group sessions can be done on a regular basis as he felt that his teenage son was starting to go through a rebellious stage and wished for some counselling. En Roszaidi Ramlee, another parent, thanked rehabilitation doctors who commonly oblige with providing documentation to schools. He said these letters help create awareness in the education department. When there is awareness, there is greater willingness to support the child. Supportive actions such as allowing parents to drive into the school compound to pick up the child, priority lanes to get food from the canteen and permission to use teacher’s toilet can facilitate a child with spina bifida. The group discussion gave the children an opportunity to voice out their concerns and share ideas.

 

Further details/infographics can be downloaded below:

New Straits Times Media Report