Beyond the Cord Apr-Jun 2021

APRIL TO JUNE 2021

beyond
the

cord

NEWSLETTER

INDEX

Foreword by PDG Leslie Salehuddin and Ir Dr Kribanandan G N Page 1
About us: DASH Page 2
DASH Operational Approach Page 3
General Meeting IFSBH Page 4
IFSBH Upcoming events Page 5
My Perspective As The Father and Doctor of a Spina Bifida child Page 6-7
Basics & Neurological complications by Dr Poorani Page 8-9
School & Learning issues in Spina Bifida by Dr Rajini Page 10-12
Webinar series by Healthcare & Education team Page 13-14
District Grant updates Page 15-16
Global Grant Medical Experts Page 17
Global Grant Phase 1 updates Page 18-20
Hari Raya and Wesak Day Greetings Page 21
Get in touch with us Page 22

00 | APRIL - JUNE 2021

FOREWORD

PDG Leslie Salehuddin

ADVISOR TO DASH, DRFC RY 18-21

As another Rotary Year draws to a close, we had a year seeing how Rotary Opens
Opportunities, as we now transition to Serve to Change Lives. At the recently
concluded virtual DISCON, we missed the opportunity of getting the Chairs of our
seven District Action Groups to present their respective updates to the District
somewhat akin to the panel discussion at the 2017 DISCON. No doubt we had quality
speakers from home and abroad, the DISCON would have been the perfect platform for
the Action Group Chairs to showcase what they had done. Also whether they have or
not met their KPIs operating in a very challenging environment and also to pitch
support from the membership, of which there may still be doubting Thomases .For
some the jury is still out on the raison d’etre of an Action Group.

That being said, I am confident the Chairs (including our Dr Kriban) will be summarising the year’s achievements
through the District e-group or through the ultimate issue of DG’s e-newsletter. We are fortunate to have our organ
”Beyond the Cord” which has encapsulated the year that was.
It was indeed a relatively quiet twelve months as far as DASH is concerned, but a major coup was getting the Global
Grant approved with a full match from the World Fund, as all Grants are now only matched 80%. We await the
temperatures to come down, well for the situation to improve tremendously before we can embark on road shows,
sessions with parents, care givers and professionals. Likewise the other District team which was supposed to conduct
a major cataract mission in Bangladesh through a Global Grant is also on hold until international travel is safe. The
newest Action Group, DAGMHI, focussing on Mental Healthalso had its first GG approved and are now strategising to
hold virtual/hybrid training as the new norm with their partners.

All the best in your new endeavours for the New Rotary Year and do stay safe!

Ir Dr Kribanandan G N

CHAIRPERSON OF DASH RY19/20 & 20/21 &
PRESIDENT OF RC DAMANSARA 20/21

We are pleased to report herewith the activities and projects undertaken by our
District Action Group on Spina Bifida and Hydrocephalus (DASH) with our partners the
Spina Bifida Association of Malaysia during this quarter.

It is with a great sense of achievement that the Global Grant is underway through the
formation of the panel & doctors and supporting personnel (see details enclosed). As I
write this forward, the total funds for the project which was agreed was finally
transferred from Rotary International to the Rotary Club of Damansara on the 4 of
June. We are therefore proceeding in earnest, as there is much to be done.

Several events are showcased herewith, and these and our other joint activities with Sibiam continue to impact SB lives and it
is clear why this initiative is needed and why it is so relevant. We look forward to taking this message district wide in the
coming months with the support of our vibrant rotary clubs. We have asked our active SiBIAM members to write about their
lives and we welcome the heartwarming story by Dr Harcharan Singh, a parent's perspective and challenges with raising a
Spina Bifida child (see pages 6&7). Moving forward, the national agenda on supplementation of our food with folic acid
requires our keen attention and we need to develop a strategy in this regard with all parties concerned. We started the
monthly webinar series during the last quarter. This has been well received and set to become a regular feature in our
calendar, see articles on page 13&14

01 | APRIL - JUNE 2021

APRIL TO JUNE 2021

DASH

The District Action Group on Spina Bifida & Hydrocephalus,
Rotary Club District 3300

Above: DASH and Sibiam Committee Members with Doctors and other HCP at the
'Educate to Elevate" seminar in Sungai Petani, Nov 2019

Connecting Rotary and the Spina Bifida Community

Our mission is to provide support in the areas of advocacy, resources, and activities to the
Spina Bifida community while promoting awareness and acceptance, to maximize the
potential and quality of life of persons with Spina Bifida and their families.
02 | APRIL - JUNE 2021

THE
DASH
Operational
Approach

The District Action Group of Spina Bifida & Hydrocephalus (DASH) is not set up as
an independent organization but as a body to stimulate interest in SB&H and
promote projects which can be jointly undertaken by Rotary clubs and other
interested organisations. The Rotary club of Damansara has taken a lead on this
matter and it is the aim of DASH to extend this work through the other Rotary
clubs in the district and always working closely with the national SB & H
organisation SIBIAM to progress awareness, Education, and Engagement.
All funds raised for these activities will be parked either in a Rotary Club account
or the SIBIAM account for works to be executed jointly.
The Global Grant will be managed by RCD and DASH can work with other clubs
and SIBIAM if specific funds are available for SB projects. We have a great need to
support the SB families particularly as the pandemic has had devastating effects
all around. We look forward to working with partner clubs to take forward this
SB&H agenda.

03 | APRIL - JUNE 2021

IF General Meeting 26th May 2021

The General Meeting of the International Federation for Spina Bifida and
Hydrocephalus (IF) took place on May 26 2021. Members were present from all over the
world including the Spina Bifida Association of Malaysia, represented by our President,
Prof Dr Amaramalar Selvi Naicker and Vice President Ir Dr Kribanandan Gurusamy
Naidu.

The General Meeting commenced with an opening speech by Mrs Elena Monzón de
Záppoli IF President and was followed by a speech by Secretary General Dr Sylvia
Roozen. They shared how the current pandemic has changed and impacted their work
which led to adaptations to work in virtual settings. IF was introduced officially with
their objectives, vision and mission and values. A geographic overview of IF members
from different regions and countries was presented.

The meeting especially highlighted the main achievements and activities for the
calendar year 2020. Special attention was given to the important topics such as right to
health, primary prevention, optimising management and care, and international
solidarity. A series of webinars was organised to stay connected with members on
various topics. The Food Fortification Initiative through Smarter Futures was a
significant discussion during the meeting. The formation of community groups such as
Youth group, Working SBH ageing group and the Community group's work were
discussed and highlighted. The World Spina Bifida and Hydrocephalus Day (WSBHD)
was an incredibly special highlight on the IF international agenda. IF urged all it’s
members to take this opportunity to raise awareness and share their stories with other
members. Vice President Ir Dr Kriban was one of the panel speakers who presented and
shared Sibiam’s journey and the success of the global grant during the webinar on 25th
October 2020.

IF absolutely looks forward to continuing the good collaboration to strengthen the work
together with IF Members in Latin American countries and other regions. The General
Meeting appointed Victoria, and Sonia to the Board of Directors; and congratulated
Cato as the new President and noted that Emma, and Frantisek would continue their
active involvement in the Board for another term. IF thanked all their Members,
Partners, and Sponsors for their trust and active involvement in their joined efforts to
strengthen the work for individuals with Spina Bifida and or Hydrocephalus around the
world.

04 | APRIL - JUNE 2021

More events from IFSBH

Due to improvement of healthcare, many
children born with Spina Bifida and
Hydrocephalus have become adults, and
are reaching their senior years. Little is
known about ageing with SBH and its
impact on physiology, mental abilities and
independence. IF’s key objective is to
improve our understanding of the life
experiences of older persons with SBH.

Therefore, IF has emphasized the importance of raising awareness for ageing with SBH. To
highlight the rights and needs for individuals with SBH, IF launched the report “Ageing with
Spina Bifida and Hydrocephalus - A descriptive analysis”. This report includes a set of
recommendations to work towards preventing and minimising the ill effects of ageing and to
help improve the quality of life of people ageing with SBH.

To gain greater insights into the perceived needs of individuals with SBH with respect to ageing,
the IF Working Group on Ageing organised a webinar and focus group discussion on “Ageing
with SBH” on the 23rd June 2021. Our Sibiam team lead by Prof Dr Amara participated in the
discussion.

IF invites you to attend and present your work during
the upcoming Multidisciplinary Care Conference. This
conference was originally scheduled for the previous
year. However, due to COVID-19, IF has to do it
differently and invites you for the first ONLINE (and
free) conference.

When?Tuesday, September 14th to Friday September
17th, 2021
Where? Online Webinar
Important dates:
July 5 2021: Conference program & opening for
registrations

05 | APRIL - JUNE 2021

MY PERSPECTIVE AS THE FATHER AND

DOCTOR OF A SPINA BIFIDA CHILD by Dr

Harcharan Singh

Every journey begins with a sense of anxiety, fear and some amount of hope and a pinch of excitement.
My journey has multiple phases. Starting from the backwaters of Tronoh Mines, my initial journey to
medical school was the first part of this journey. Medical school was tough, my initial years as a
houseman were hectic but fun filled. Next was my tenure as a medical officer which was a roller coaster
ride to say the least. Posted in the small town of Teluk Intan (formerly known as Teluk Anson), I was
literally a jack of all trades from covering the OT, the clinics to the emergency department. My tough
childhood inferred a sense of responsibility; I was also totally committed to the treatment of my
patients. It was during this phase I met my better half and literally my rock in this journey. We got
married in April of 1976 and a year later we were blessed with my eldest child, Harmesh Singh.

Ask any father, the anticipation of the first born is always special. However, when the labour room
Sister handed me Harmesh, till today I’m not able to describe what I felt. At this point I didn’t know
what to do. On one hand I had my wife who has just gone through labour and in need of my support.
Then I faced Harmesh challenging all my medical knowledge and training. I was unable to answer any of
the questions I asked myself. At this point, I turned to my mother-in-law and told I needed her to be
with my better half as I needed to take Harmesh to Hospital Kuala Lumpur. Harmesh was of barely 3
hours of life when we made the journey to HKL together in my trusted Datsun. Using the trunk road
from Teluk Intan we made the journey to HKL for consultation with Dr Mohandas. Harmesh was
assessed and was then scheduled for meningocele closure the next day. I was advised to keep an eye
out for developing hydrocephalus. At this point despite the evidence and signs in front of me and with
my knowledge of medicine, the fatherly instinct took over and rather than monitor the situation I chose
to think the worst was over. I must add I was in the dark as I had no one to turn to for advice nor
guidance. As the neurosurgeon had cautioned, Harmesh developed symptoms of hydrocephalus and
had to be fitted with a VP shunt revision at the 3rd month of life. The next 2 years I was wondering
aimlessly without any guidance about spina bifida as a disease nor the complications that would arise. I
was completely in the dark. At this point I was hoping for some, if any assistance from my colleagues
from the medical fraternity however nothing was forthcoming. Amidst all this chaos there rose a
glimmer of hope in the shape of being awarded the Colombo Plan Scholarship. I chose to specialize in
the field of paediatrics in Wales.

The journey in Wales was a wakeup call for me. Here I was a medical officer and a father who had been
living with a spina bifida child for 2 years. When confronted by the Professor of Paediatrics OP Grey
regarding my sons’ condition, I was like a deer facing the headlights. “Have you examined your sons’
hips?”, “Have you cultured his urine?” and the questions kept on coming but the answers were always in
the negative. At this point I told myself, ‘stop feeling sorry for yourself’. I had to admit to the fact that
Harmesh had spina bifida and it was time I challenged this my son’s condition as a doctor and above all
as a father. In Wales, multiple interventions, procedures, and investigations were carried out on
Harmesh. His hip was stabilized with arthrodesis, the renal profile and urine cultures were normal. My
studies were also continuing at a good pace with my training under the very same professor who
knocked some sense into me. The total time spent in Wales was 2 years, however it was what I would
say the building blocks or steppingstones for Harmesh in the latter part of his life.

06 | APRIL - JUNE 2021

Upon returning to Malaysia as a specialist I was posted to Malacca General Hospital and Harmesh was
now 6 years old. Being at this age his mobility was improving. One must remember that his mobility is
coupled with the disabilities that were pre-existing. Harmesh developed multiple pressure sores over
the inner aspect of his foot as well as over the gluteal region. Again, I looked for some guidance and help
from my senior contemporaries even senior pediatricians. However, all I got in return was a chorus of
the same answer ‘try not to put pressure over the wounds’. It was back to the drawing board for me, and
I had to come up with methods which were either not in existence or not tried before for these pressure
wounds. When I was successful in the treatment, I could see the joy on Harmesh’s face and for my part
there was a sense of jubilation with a sprinkle of caution. When I was about to leave Wales, Professor
Grey told me “Spina Bifida is such a condition where after solving one problem, and you are just about to
stretch your aching back another problem crops up”.

Education is the outmost right of any child. The same goes for a spina bifida child. Their IQ is
functionally similar if not better than normal children. Harmesh was enrolled into the government school
for his primary as well as secondary education. The challenges that came were non handicap friendly
schools. We (myself and my misses) had to request that his classes were scheduled on the ground floor.
We also requested extra time during his examination for his toilet breaks. Here I must mention that in
every school Harmesh attended the school authorities were more than accommodating to our needs.
However, I do think we need to educate the Kementerian Pelajaran regarding the different needs for
different disabilities.

As I mentioned, regardless of all his shortcomings, secondary to his condition I wanted Harmesh to
have as normal a life as possible. As in my early days I had my trusted Datsun,I wanted Harmesh to have
his own set of wheels as well. Spina bifida individuals can drive and, in our country, and after some
research we discovered mechanics who are able to perform this modification. The main criterion for a
car is that it must have automatic transmission.

It’s been 44 years of what I would say a very colorful journey. I have been tested both as a father
and a doctor. My medical knowledge and skills have been put to the test, even my emotions as a father
have been tested. At the initial stages of denial, to accepting the condition followed by tackling all the
challenges, I vowed to Harmesh and myself that my main goal is for him to be an independent and
healthy adult. Today, I can stand proud that Harmesh is a qualified lawyer and is currently staying on his
own in Kuala Lumpur. Harmesh and I have fought this battle together. He is very intelligent and updates
himself on the latest in the treatment of Spina Bifida prompting me to keep ahead of him. Harmesh’s
determination and resilience have been my inspiration.

07 | APRIL - JUNE 2021

SPINA BIFIDA: BASICS AND NEUROLOGICAL
COMPLICATIONS BY Dr Poorani

Paediatric Neurology Specialist, Hospital Tuanku Azizah

WHAT ARE THE CHANCES THAT MY CHILD CAN WALK?

Walking and mobility issues – the nerves supplying the leg muscles and sensation do not work
properly below the area of the spina bifida defect. This can cause muscle weakness of the legs
and sometimes paralysis.
Chances that a child can walk depends on:
·The location of the defect,
·Size and type of spina bifida, and
·Care received before and after birth.

Thoracic spine image

The higher the lesion is on the spine means that the nerves supplying the lower area of the body
will not function well. A child with a thoracic lesion is unlikely to walk, those with lumbar (lower)
can walk with aids and assistance, and those with sacral level lesions are most likely to walk
albeit with minimal assistance. Those with myelomeningocele and complications will, usually
have difficulty with mobility/ambulation. Care is necessary for preservation of the sac during
the birthing process to prevent complications such as meningitis and hydrocephalus. Thus,
those delivered with an open sac are at increased risk for sustaining ambulation and mobility
issues.
HYDROCEPHALUS
Hydrocephalus is basically the excess of cerebrospinal fluid (CSF) accumulation in the head
caused by a disturbance of CSF formation, flow, or absorption. 15-25% of children with open
myelomeningocele develop hydrocephalus. The accumulation of the cerebrospinal fluid causes
an increase in pressure of the brain and causes brain damage. Hydrocephalus needs to be
treated urgently, with the insertion of a hollow tube (shunt) to drain the excess fluid from the
brain into the abdomen or heart.

08 | APRIL - JUNE 2021

MENINGITIS/BRAIN INFECTION
Meningitis is an infection that occurs to the layer covering the brain and spinal cord. The
disruption/defect in the meningeal layer at the spina bifida region can lead to an infection
of the brain. This is high risk of meningitis in children with open myelomeningocele. Those
with spina bifida cystica can also present with meningitis due to a minute defect in the
meninges layer causing an ascending infection into the brain. Meningitis can also be
associated with the insertion of shunts.

ABNORMAL SENSATION OVER THE LOWER LIMBS?
Spina bifida is a condition that can lead to disturbance of the nerves supplying the lower half of
the body. The location of the spinal disruption lower in the spine results in weakness and loss of
feeling. Thus, children with spina bifida typically have some degree of leg and core muscle
weakness and loss of feeling in the groin and feet or legs.
The strength and feeling do not improve with age due to nerve damage and can occur in both
closed neural tube defects and myelomeningocele. Children with these types of spina bifida may
lose strength and sensation as they grow, and mobility can become more difficult with age –
walking aids may be necessary.

CHIARI ll MALFORMATION
When the hind brain and the brainstem is pushed into the upper spinal canal, it can interfere with
the normal flow of cerebrospinal fluid. The brainstem is the part of the brain that controls
breathing and swallowing. The disruption to the cerebrospinal fluid flow leads to an increased
pressure in the brain cavity and further downward protrusion. Commonly seen in children with
myelomeningocele. Can be identified incidentally or be present with symptoms of vomiting,
headache, and abnormal sensation. Neurosurgical intervention is required to reduce/relieve the
pressure.

TETHERED CORD
The spinal cord and nerves float freely in the spine. In tethered cord syndrome, the spinal cord is
attached to the overlying membranes and bones (vertebrae). This causes stretching of the spinal
cord as the child grows, causing loss of muscle power in the legs and bowel and bladder problems.

NEUROGENIC BLADDER AND BOWEL
The nerves supplying the bowel and bladder sit extremely low in the spinal canal. Spina bifida
causes a lack of nerve innervation to the bowel and bladder. Thus occurs predominantly in
myelomeningocele and in tethered cord syndrome. Bladder problems - problems passing urine or
loss of control passing urine (urinary incontinence). Bowel problems – difficulty passing stools
and hard stools (constipation), frequent watery loose stools (diarrhoea), or loss of control of
passing stools (bowel incontinence).

LEARNING DIFFICULTIES
Many people with spina bifida have normal intelligence. About 40-50% of children especially
those with myelomeningocele will have learning difficulties. The learning concerns encountered
are with focus and attention to task, problem solving and task management, grasp of abstract
concepts and understanding of spoken language. Once the learning issues are identified, these
children will be need to referred for individualized educational programs.

09 | APRIL - JUNE 2021

SCHOOL AND LEARNING ISSUES IN SPINA
BIIFIDA BY Dr Rajini Sarvananthan

Consultation Developmental and General Paediatrician

Children with Spina Bifida will have difficulties with learning and school, therefore early
intervention is crucial and needed. Parents play a huge role in ensuring that children are
as ready as they can be. Communication with the school is important to ensure that any
problems are identified early and intervention is done as soon as possible. Parents
should realise that learning does not only take place in school but that its starts from
home. Children should be trained and educated on early self care and self management.

SCHOOL READINESS
Physical wellbeing and motor development of a child is crucial such as overall health of
the child, nutrition, quality sleep and the growth of the child determines the readiness of
the child for the school. Social and emotional development such as the ability to express
one's own emotions, empathy, cooperation and turn-taking is equally important for the
child. Approaches to learning like enthusiasm, curiosity, temperament, culture and
values from the family play a vital role in their readiness for school. Exposure to
language development in terms of listening, speaking, vocabulary and literacy skills is
highly encouraged. Lastly, some general knowledge and cognition including sound-letter
association, spatial relations, and number concepts would be good to start off with.

FAMILY AND COMMUNITY SUPPORT
Every children with SB should receive good health care, optimal nutrition, and daily
physical activity so they arrive at school with healthy minds and bodies. These children
also should have access to high quality preschool beforehand. Parents and families
should devote their time daily in helping their children to learn and have proper access
to quality education. Parents need to teach adaptive skills such as practical every day
skills, how to function in the society, how to face challenges and demands of society and
environment they live in, to be independent in managing themselves and how to interact
with others.

ADAPTIVE SKILLS
Adaptive skills comprises conceptual, Social and Practical life skills. Conceptual skills
allows children to learn communication, literacy, numeracy, time and developing with
money. Social skills such as learning about the school, the community around them,
interpersonal relationships, and how to play and have leisure. The final and crucial skills
are practical life skills like feeding, dressing, personal hygiene and motor skills.

10 | APRIL - JUNE 2021

SCHOOL ISSUES IN CHILDREN WITH SPINA BIFIDA
MOBILITY
The most common issues related with mobility are a decent and required space to access
the classroom, toilet, canteen, play areas and laboratories. Parents are advised to do an
early visits to the school before enrolling their children to check on the availability of
classrooms at ground floor level, distance of the toilet and the classroom, availability of
a changing rooms, wider walking ramp and a buddy system for their children to obtain
peer support.
CONTINENCE
The availability of clean a toilet, private changing room facilities and access to clean
water should be the key to use. These facilities would help children to be independent
with the option of clean intermittent catheterisation (cic). Beside that, a regular plan to
have cic during the break times would be helpful. Parents need to prepare their children
from the aspect of bowel management by avoiding constipation. Teachers need to take
the responsibility to record every incidence of an accident that could happen in school.
SOCIAL EMOTIONAL DIFFICULTIES

Copp JA et al. Nat Rev Dis Primers 2008

11 | APRIL - JUNE 2021

LEARNING DIFFICULTIES IN CHILDREN WITH SPINA BIFIDA
Every child with Spina Bifida will have a different learning problem. Although
most children with SB have IQ within normal range, they still experience learning
difficulties. Presence of hydrocephalus and other brain abnormalities, level of
the neurological lesion, frequent hospital admissions or medical care and
psychosocial factors determines the learning abilities and difficulties associated
with it.
EXAMPLES OF LEARNING DIFFICULTIES

Eye hand coordination (visuomotor and visuoperceptual skills) such as writing
and copying from the board and with graphical representations or drawing
require social attention. Parents need to monitor their children's motor skills
from infancy and work on self help skills to train eye hand coordination by using
puzzles, blocks and lego. Modifications are also needed at the school level, for
instance print materials instead of copying or the use of gadgets to type out.

Comprehension of languages also would be another challenge for SB children
which may only be apparent after Year 3. They may encounter issues like
speaking with better vocabulary, expressive skills, and find difficulties with
higher order thinking, analyse, compare, reasoning, sequencing ideas etc.
Parents can start reading practice in early age, story telling, problem solving
activities that can improve their children's language literacy.

In summary, every children with SB learns in different ways and has different
challenges in their learning process. With the help and support of the parents,
community, educators, school and society we can make the difference in their
learning experience.

12 | APRIL - JUNE 2021

Webinar series by the Healthcare & Education

The on live Health webinar series with Sibiam's panel of doctors is going well monthly
and new team feature with various topics and medical disciplines related to SB.
Puan Nur Khalilatul Amla the Head of Occupational Therapist (Sunway Medical Centre), a
certified spinal Cord Injury Trainer and certified in Wheelchair Skill and Seating Assessment
by WHO, had her online sessions with a SB audience on the 22nd May 2021. She covered
an important topic, Daily Activities Management in Spina Bifida Patients. We had an
informative and excellent sharing session with Puan Amla.
This was followed by an online webinar on the 19th June 2021 by Mr Srihari (Senior
Consultant Pediatric Urologist & Surgeon and also a Senior lecturer (Division of Pediatric
Surgery, Dept of Surgery, Faculty of Medicine, University of Malaya and Dr Selvakumar
Sivapuniam, Consultant Pediatric Nephrologist Selayang Hospital, Dept of Pediatrics, Vice
President of Malaysian Paediatric Association and Treasurer of Asia Pacific Paediatric
Association. We had about 100 participants attending this talk from FB live and zoom.
Their topic of discussion was:
Neurogenic Bladder: Definition, diagnosis and prevention of kidney injury among children
with Neurogenic Bladder by Dr Selvakumar and Surgical Management of Neurogenic
Bladder by Mr Srihari. There was a lively session discussion after the talk with both
specialists.

13 | APRIL - JUNE 2021

Upcoming Webinars from the Healthcare &
Education team

July 24, 2021
Neurogenic Bowel Management in Spina Bifida Patients -Dr Brenda Saria

Yuliawiratman
Neurogenic Bowel Care: A SB Person Experience - Pn Nur Aini Binti Salamat

August 21, 2021
Physical therapy in SB (Terapi fizikal untuk kondisi SB) – Physiotherapist

September 18, 2021
Nutrition in SB children (Nutrisi dalam SB) - Dietitian

14 | APRIL - JUNE 2021

District Grant updates

A District Grant of RM 8,000.00 was approved by the District through RC Damansara.
Prior to application for this District Grant a needs assessment was conducted amongst
the patients and a list of their needs was ascertained and the cost totalled RM 12,540.17
as shown in the table below. In addition to the RM 8,000.00 obtained from the District
Grant, President Kriban and AG Benny Poh contributed RM 821.60 and RM1000
respectively and the remaining shortfall was financed by Sibiam. We have successfully
purchased and distributed all the required medical supplies and medical equipments to
the selected beneficiaries. We take this moment to thank RC Damansara for their efforts
in securing the Dictrict

15 | APRIL - JUNE 2021

District Grant Updates

16 | APRIL - JUNE 2021

Global Grant Phase 1 Medical Experts

PROF DR AMARAMALAR DR SELVA KUMAR PROF MADYA DR PROF MADYA DR
SELVI NAICKER RASHIDAH SHUHAILA

PROF DR

AMARAMALAR SELVI DR SELVA KUMAR PROF MADYA DR PROF MADYA DR
Consultant Consultant Paediatric RASHIDAH SHUHAILA

Rehabilitation Nephrologist Senior Consultant Senior Consultant of
Medicine Physician & & Global Grant Rehabilitation Medicine Obstetrics &
Gynaecology
Global Grant Coordinator Physician
Coordinator

DR MUHAMMAD KAMAL DR BRENDA SARIA DR POORANI DR POONGKODI
ANANDAKRISHNAN NAGAPPAN

DR MUHAMMAD DR BRENDA SARIA DR POORANI DR POONGKODI
KAMAL YULIAWIRATMAN ANANDAKRISHNAN NAGAPPAN
Consultant Paediatric &
Orthopaedic Surgeon & Consultant Paediatric Neurologist, Consultant Urologist
Lecturer Rehabilitation

Physician

DR LUVAN MARKANDAN PROF DR NOR FAIZAL DR SHIHARI SINGARAVEL PN AMLA KAMAL

DR LUVAN PROF DR NOR FAIZAL DR SRIHARI PN AMLA KAMAL
MARKANDAN Cons Neurosurgeon, SINGARAVEL Head of Occupational
Paed Neurosurgery & Senior Consultant Therapist at Sunway
Paediatric Interventional Pain Pediatric Urologist &
Orthopaedics Surgeon, Management Pediatric Surgeon Medical Centre

17 | APRIL - JUNE 2021

Phase 1: Global Grant updates

Phase 1 (Teaching / Learning Material Prepartion

To design and formulate best methods of information delivery to trainees in
Phase 2
To prepare relevant content Eg, power points presentations, visuals and videos
Information on SB for public/ community awareness -brochures/flyers, booklets
etc
Conference display - banners , postures
‘Experts' will  also function as trainers to train other HCP in phase 2

•The team agreed to get the necessary content endorsements from the various
professional bodies so that the global grant awareness programme is recognised.

•The team agreed a tentative timeline to complete the tasks, taking into consideration
the extension of the MCO.

18 | APRIL - JUNE 2020

Phase 1: Global Grant updates
The Progression of Phase 1

Meeting 1May 2021- 2nd update
List and content outline of topics for HCP and SB family (PPT) was presented by the HCP

Shared ideas on brochure/flyers, poster and other materials.
 

Meeting: 3rd update, date to be decided
PPT slides based on the topic selected
Draft of public information materials.
 

Meeting: 4th update, date to be decided
Complete set of teaching/training materials.
Discussion on printing and designs-prepared to be sent for printing

 
Meeting: 5th and final update, date to be decided

Final Sibiam Training Toolkit readied
Phase 2 planning with the team

Outcome of the Phase 1

A more organised, structured content for future training/ awareness programs.

Pre-prepared training material that will enable a more holistic, standardised and
up to date content to be delivered by the trainers.

Printed and soft copy content can be made available for end users in the form of
SB Training Kit.

Soft copy of Educational content for public /SB clients will be available to be
distributed /displayed during SB awareness programs in each state.

19 | APRIL - JUNE 2020

20 | APRIL - JUNE 2020

SELAMAT HARI RAYA AND HAPPY VESAK
DAY

21 | APRIL - JUNE 2021

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

RY 2020-21

SECRETARY CO-CHAIRPERSON CHAIRPERSON
PP DR SHAN NARAYANAN PAG DR SELVA KUMAR PRESIDENT

IR DR KRIBAN G N

PAG SUSAN JOSEPH TREASURER
PAG PREEMJIT KAUR GILL

PAG DR BERNARD CHAN PP ALEX ABRAHAM ADVISOR
PGD LESLIE SALEHUDDIN

PE LT CDR SHANDRA RTN DR WILKINSON TAN PRESIDENT
DR JANET FOO

PROF DR AMARAMALAR DR POONGKODI DR YUSMA AZNI
SELVI NAICKER NAGAPPAN

21 | APRIL - JUNE 2021

APRIL - JUNE 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: Ir Dr Kribanandan G N
Contributors: Dr Poorani Anandakrishnan, Dr Rajini Sarvananthan,
Dr Harcharan Singh
Compilation done by: Ms Mahes Varatharaj, Dr Wong Xiu Yu

22 | APRIL - JUNE 2021