Beyond the Cord Jan-Mar 2022

JAN TO MARCH 2022

beyond
the

cord

NEWSLETTER

INDEX

Foreword by PDG Leslie Salehuddin and Ir Dr Kribanandan G N Page 1
Phase 2: Training HCP on the management of Spina Bifida Page 2
Phase 2: Summary of Train the Trainers workshop 25 & 26 Mar Page 3
Train the Trainers Workshop summary by Dr Chua-Li Shun Page 4
Webinar series by Healthcare & Education Team Page 5
The physical Therapy for Spina Bifida by Puan Nor Azizah Page 6
Psychological Issues in Children with Spina Bifida by Dr Yang Wei Wei Page 7
Page 8
DASH Committee Transitions Page 9
DASH Welcome New Committee Members Page 10
DASH Committee RY 21/22 Page 11
Get in Touch With Us

00 | JAN - MAR 2022

FOREWORD

PDG Leslie Salehuddin

ADVISOR TO DASH, DRFC RY 18-22

We have completed the first workshop for Medical and rehab professionals on
25th and 26th March funded by the Global Grant. I am delighted that despite
the lockdown, the event materialized amidst SOP compliance. It was my first
experience in attending both days of such a workshop as my previous
experience was the DAGA workshop where I had attended the opening with
the then Deputy Minister of Health and observed a short while of the workshop
in session.I am more than convinced that it was well organized and the speakers
were excellent and it was certainly an eye opener and educational for me.
Everyone played a part, the team from SIBIAM led by Prof Dr Amara and
members of DASH spearheaded by Dr Kriban

DG Dato Bindi officiated in the presence of Incoming Governor Dr Krishna Kumar and DGN Arvind also
dropped by and so did PPAG Benny and wife. Must single out PAG Premjit who was manning the
registration counter diligently. PAG Ken was also present representing his club, a partner of the grant. The
venue at ReGen Rehab Hospital was excellent and being offered to us gratis through the good office of
Prof Amara meant we can reassign the savings to other areas of the grant. The technical team was very
professional and even though there were very minor glitches, overall it was a very well run. As usual the
graphic recording was a novel feature as the audience got to see it live unlike at the GG launch, and the
plaques of appreciation based on Tikka’s previous record of the launch of the global grant in July 2021 was
a surprise and well appreciated.I am also delighted that AG Kovind, Rtn Dr Thaneemalai as well as CP Dr
Raj have been co-opted into our DASH committee and we welcome the three of them and am sure they
will be making an invaluable contribution for the Spina Bifida cause. AG Kovind has also linked DASH to
D3310 in both Sabah and Johor and some inroads has been made with Kuching following a recent visit by
Dr Kriban. All these are exciting news moving forward

Ir Dr Kribanandan G N

CHAIRPERSON OF DASH RY 19/20 & 21/22

IMMEDIATE PAST PRESIDENT OF RC DAMANSARA

It is with a great sense of achievement that we record the successful completion of the
phase 2 Global Grant Workshop during this quarter. This was a culmination of several
months of organisation and preparation with the support of almost 20 doctors who
helped pull together the key training materials for the ‘Train the trainer’s workshop’.
This was undertaken with the keen support of the President of the Spina Bifida
Association of Malaysia (SiBIAM), Prof Dr Amara Selvi Naicker and her Team of
volunteer doctors. The lead up to the event and the workshop outcomes has been
documented with the write up by Dr Chua which is enclosed herewith. As I write this
forward, we are firmly in place to move to phase 3 of the project. We look forward to
partnering with the Rotary Clubs on the ground particularly in the states identified to
start with the regional workshops.

I would also like to take this opportunity to thank SiBIAM for successfully continuing with the monthly webinars on different
aspects of SB&H care. These events and the articles by our supporting HCPs which are reported herewith go a long way to
highlighting the complex muti-disciplinary nature of the SB condition.We also welcome the new members to the DASH
committee and look forward to taking the message for intervention to Rotary Clubs district wide in the coming months.
Thank you

01 | JAN - MAR 2022

Phase 2: Training The Healthcare Professions
on the management of Spina Bifida

We have proudly progressed to phase 2 of the Global Grant project despite all the challenges from the
pandemic. Million thanks to our committed team who did all the ground work on their busy schedule to bring
together this project. Not to forget our speakers who have dedicated their time, energy and commitment to
bring the knowledge and expertise in preparation of teaching materials. As a result, we have successfully
compiled all the teaching aids/materials and presented them in phase 2 TTT workshop on the 25th and 26th
Mar 2022

02 | JAN - MAR 2022

Training Healthcare Professionals on

management of Spina Bifida

By Dr Chua Li-Shun

Greetings from the Spina Bifida Association of Malaysia (SIBIAM)!

The first quarter of 2022 found us busy preparing for the Workshop on " Training Healthcare
Professionals on the management of Spina Bifida: Training the Trainers". This National level
Workshop is organised in collaboration with our partner DASH ( Rotary District 3300 Action
Group on Spina Bifida & Hydrocephalus) and supported by a Global Grant from Rotary
International.

The Global Grant funds large-scale international humanitarian projects, vocational training
teams and academic scholarships that have sustainable and measurable outcomes. This
workshop is Phase 2 of the “Training Healthcare Professionals and Special Needs Teachers on
the Management of Spina Bifida” project – a 2-year venture funded by the Global Grant to
raise awareness about Spina Bifida and Hydrocephalus (SBH), including the available
interventions and opportunities for individuals with SBH to live fulfilling lives. It was preceded
by Phase 1: Preparation of Training Materials, which formed the foundation of this workshop’s
scientific program, developed by SIBIAM advisors. The subsequent program, Phase 3:
Awareness and Training, will consist of regional workshops conducted in selected locations
nationwide.
After months of planning, the workshop was fina
lly held on 25-26 March 2022 at ReGen Rehab
Hospital in Selangor. A total of 34 participants took part in the 2-day workshop which saw 20
experts in various disciplines – both clinical and non-clinical – share their knowledge and
experience in different areas of SBH management. The participants consisted of physicians,
surgeons and allied healthcare professionals from multiple specialties and sub-specialties;
representing states such as Johor, Negeri Sembilan, Pulau Pinang, Perak, Sabah, Sarawak,
Selangor, Terengganu and Kuala Lumpur. The workshop received support from Rotarians from
DASH, as well as SIBIAM volunteers.

The opening ceremony was graced by DG Dato’ Bindi Opening speech by DG Dato' Bindi Rajasegaren
Rajasegaren from the Rotary Club of Greentown, Ipoh – a
major donor who is recognised for her contribution
towards moving the mental health agenda at the national
level and various other efforts.
The workshop was conducted in a hybrid format to
accommodate presenters who were unable to attend in
person; the presentations were also largely engaging,
drawing positive feedback from those who were present.
Some workshop highlights include the Live Graphic
Recording by Tak-Tik Visual Solutions as well as a
presentation on sustainable farming by entrepreneur Dr
Billy Tang of PWD SMART Farmability.

03 | JAN - MAC 2022

The workshop closed with an open discussion among participants on how to move forward to
Phase 3, where participants from their localities are invited for a workshop to improve SBH
management within their community. Dr Nor Aida Musa, a rehabilitation physician from Kuala
Terengganu, suggested for wider sharing among those present about how SBH management is
done in their respective centers, in order to better understand the needs of the community.
There were also concerns raised about the lack of certain sub-specialty services in East
Malaysian states, which brought about suggestions on how to further liaise with consultants
across the country to bridge the gap.




Dr Muhammad Kamal bin Muhammad Abdul Jamil, Some participants at the workshop
orthopaedic surgeon, delivering his presentation on


Musculoskeletal Deformities in Spina Bifida

Participants and the committee members



1The Next Step” – graphics by Tak-Tik Visual
Solutions, detailing Phase 3 of the Global Grant

SIBIAM, DASH and the Rotary Club Malaysia are excited for Phase 3 of the “Tra

ining Healthcare
Professionals and Special Needs Teachers on the Management of Spina Bifida” project, which is
expected to commence June 2022 onwards. A more detailed account of the workshop will be
published in the next issue, so stay tuned for that!

04 | JAN - MAC 2022

Webinar series by the Healthcare & Education

In total 12 webinars were conducted from Feb 2020 to Feb 2021 which garnered good support from
Healthcare professionals, SB members and public. It was an achievement to Sibiam as an organisation that
aims to bring greater awareness about SB condition and management care to its members, families and
public in general. We believe through these series of health webinars, we have achieved our objective to
educate members on the various issues related to spina bifida and available treatments, therapies, medical
interventions, diet etc for the well being of persons with SB. Sibiam's H
For the Dec 2021 webinar, we had Dr Yusma Asni Bt Yusmido, Rehabilitation Physician, Tengku Ampuan
Afzan Hospital, Kuantan. She spoke on the topic: PRESSURE INJURY IN SPINA BIFIDA. More than 60
participated and benefited from her talk. This was followed by another webinar on the topic "CLEAN
INTERMITTENT CATHETERIZATION IN SPINA BIFIDA" on the 22nd Jan 2022 by Cik Farizan Abdul Majid
SRN, Staff Nurse from Department of Nursing, University Kebangsaan Malaysia. . We had about 50
participants who attended this talk live from Facebook and zoom.
The Q&A session was interactive and there were some interesting questions posted to the panelists. The
session was moderated by Dr Chan Yean Koon. It was the final webinar planned for the durations. The team
will continue working to produce more webinars on themes related to SB care and management for SB
persons and families in the future.

05 | JAN - MAR 2022

The Physical Therapy for Spina Bifida

By Puan Nor Azizah Mohamad, Physiotherapy,
Medical Rehabilitation Officer, HPKK UKM

Spina bifida is a birth defect in the spine that exposes part of the spinal cord
(meninges).
Spina bifida occulta is a ‘mild’ category. Spina bifida cystica includes meningocele,
myelomeningocele. Myelomeningocele most commonly affect lumbar & sacral
area
There are cases of SB that show paralysis or muscle weakness involving only one
leg (unilateral) but mostly both legs are involved (bilateral).
Spinal nerve lesions can cause weakness or paralysis of the leg muscles depending
on the level of the spinal cord involved, sensory deficit, abnormal, musculoskeletal
deformities such as club foot, abnormal hip joint, hip or knee flexor tightness or
contractures, unable to control bladder and bowel.
Physical Impacts are gross motor development, walking style abnormalities, using
more energy to walk than a typical child (compensate with trunk movement),
muscle atrophy of the legs, overuse/repetitive injury to the limbs of the
hands/shoulders. If there is a wound on the sole of the foot, it may go unnoticed.
Pressure wounds are slow to heal. There are also psychosocial issues such as lack
of self-confidence, need to use wheelchair for obese child.

06 | JAN - MAR 2022

Psychological issues in Children with Spina
Bifida

By Dr Yang Wei Wei, Senior Lecturer and clinical child
psychologist

The psychological issues in children revolve around development, cognitive/ neuropsychological,
emotional and social aspects.The biopsychosocial approach to understanding health is biopsychosocial,
many aspects are overlapping

The current situation is that we are changing our expectation, quality of life, challenges and barriers. We
should not allow any diseases to define what we do.
We have talked about issues with certain conditions. Although SB is the main issue, we still have other
aspects to focus on.

Spina bifida related stressors has significant and cumulative impact on individual and family functioning.
For example, cognitive, neurological features, physical development, multiple surgical procedures
experienced by most, the difficulties with bowel and bladder management as well as ambulation
challenges, social skills deficit, individuals’ difficulties in mastering developmental milestones.

We have different expectations for different age groups of children.

In infancy (0-11 months) and toddlerhood (1-2y11m), the child is very dependent on their parents. Hence,
we have to assess the family functioning, stressors and supports in the family. Information about spina
bifida is very crucial and has to be provided continuously. It is also important to connect with others who
have similar experience for support. We should start looking at developmental needs to provide
necessary stimulation and intervention. We start to encourage self-management and independence, for
instance, we teach children to keep their own toys. Besides, physical activity is important. Whenever
possible, if parents find developmental delay, early intervention is vital. Lastly, parent-child attachment,
parenting skills and parental mental health are also important aspects. As child is very dependent on adult
around, we have to make sure their parents are functioning well. Sometimes when they have lack of
experience, parents tend to be anxious and worried. They can have poor mental health, postpartum
depression, or due to the birth process itself.

Adolescence is the period when they moving to secondary school (13-17y11m). We have to plan for them
to transit into adulthood. The self-management and independence should remain the same. Some of them
are independent, but some is still lacking. Other aspects might be changing for example peer and
relationship, possibility of development of at-risk behaviors, areas of strength, activities and hobbies,
social skills training. One important aspect is sexual health and education. Parents have misconception
that disabled children do not need such information. However, they do need to have knowledge to
protect themselves. We do social skills training because they might have lack of social skills

07 | JAN - MAC 2022

DASH Committee Transitions

DASH bid farewell to founding member and co - chair,
PAG Dr. Selva Kumar. Dr Selva’s expertise as a Paediatric
Nephrologist, was invaluable towards helping the DASH
committee plan the Global Grant education and training
program. He has given a series of talks and webinars on
the management of urological problems children with
Spina Bifida face. We hope he will continue his inputs in-
between his busy schedule as the current President of the
Malaysian Paediatric Association.




DASH would like to thank Dr Poongkodi
Nagappan for serving on the committee.
Dr Poongkodi is Consultant Urologist at
HKL.




08 | JAN - MAC 2022

Welcome New Committee Members

AG Kovind M Jaganathan is the current group 19 Assistant
Governor District 3300. He joined Rotary in 2001and was
President of RC Senawang in RY 2005/06. He is an
engineer and has been with TNB since 1998. Through AG
Kovind’s vast Rotary network,including his connection with
clubs in District 3310, we hope to promote the work of
DASH to the other Rotary Clubs in District 3300 & 3310..

CP Dr Raj Kumar joined Rotary in 2014. He was Charter
President of RC Klang Valley in 2019. His work as Chairman of
Organ Donation Awareness Committee (2017-18), member of
Action Group on Cancer Awareness & Prevention (2018-19),
Chairman of DAG-MHI (2020-22), Deputy Chairman of
National Coalition for mental Wellbeing (2022) positions him
suitably to share his experience with DASH




Rtn Dr Thaneemalai Jeganathan is a Consultant OBGYN. He was
past president of the O&G Society of Malaysia (2017). He was
Principal Trainer & Steering Committee member for Intensive
Course in Obstetrics Emergencies. This experience will be invaluable
to organising future training courses.

PP Dr Jeyalakshmi Ratnavalen was President of RC Penang in RY
2020/21. She held the post of Timbalan Pengarah Hospital Pulau
Pinang till her retirement. We are certain her connections in the
North will form an important compliment to extending the work
with Spina Bifida community in this region.

09 | JAN - MAC 2022

District Action Group on Spina Bifida and
Hydrocephalus (DASH) Committee

RY 2021-22

SECRETARY ADVISOR CHAIRPERSON
PAG SUSAN JOSEPH PGD LESLIE SALEHUDDIN IPP Ir DR KRIBAN G NAIDU

PP DR SHAN NARAYANAN TREASURER PAG DR BERNARD CHAN
PAG PREEMJIT KAUR GILL

PP ALEX ABRAHAM PRES Lt CDR (R) SHANDRA PP DR JANET FOO RTN DR WILKINSON TAN

AG KOVIND RTN DR THANEEMALAI CP DR RAJ KUMAR
VIGNESWARRAN

RTN LERK YUNG ANG PP DR JEYALAKSHMI PROF DR AMARAMALAR DR YUSMA AZNI
SELVI NAICKER

10 | JAN - MAC 2022

JULY - SEPT 2021

GET IN TOUCH WITH US

Contact:
DASH/Sibiam at 012-690 3390
or c/o JTK Consult at 03-7710 3799

Facebook: District Action Group on
Spina Bifida and Hydrocephalus /
Spina Bifida Malayisa

Website: www.sibiam.my

For this issue:
Editor: Dr Janet Foo
Contributors: Dr. Chua Li-Shun, Puan Nor Azizah, Dr Yang Wei Wei
Compilation done by: Ms Mahes Varatharaj




11 | JAN - MAC 2022