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M. Koning et al.
orative effort, and networking are particularly
needed if a defect as rare as SBHis. Another
obstacle to initiation of treatment for acatastrophic disease like SBH is the fatalism that
leads to the mistakenconviction that they “all
die”. Demonstration that appropriate surgical
treatment leads to many satisfactory outcomes
will reverse such impressions over time. The
idea that surgery for the condition in question
is impossible in the designated LMIC is obviously not acceptable. Persistence must dominate all efforts. Appeal to other health
departments must dominate the strategic planning. Sometimes all that is needed is one
department or hospital leader to advocate for
the development of the project; this will then
become a model for others. A minimal voluntary effort may already be in place, as there
already was for SBH at Addis Ababa
University and MCM.This was facilitated by
the local Rotary Club (RC), by the
International Federation for Spina Bida and
Hydrocephalus (IFGlobal), and by a donor
from Norway, all of whom were able to periodically provide the needed shunts to the neurosurgeons. Support from an NGO can
improve such efforts.
3. Initiation of a Hospital Base for neurosurgical
interventions for SBH, required cooperation
between the leadership and founders of a hospital that was willing to offer all needed personnel and facilities. Neurosurgery involves
many complex procedures, but in Ethiopia,
SBH and neurosurgical trauma were the most
commonly performed neurosurgical operations [9] and, therefore, the initial focus was
on neurosurgery. Educating neurosurgeons
was a slow process that was the rst major
rate-limiting step in creating an SBH program. Once neurosurgical capacity was
expanded, other aspects of care needed
increased attention. These included more neurosurgeons, pediatricians, anesthesiologists,
operating rooms with trained staff, recovery
rooms with ventilator support and rehabilitation service. MCM, a private hospital, had
both the personnel and the facilities needed
and this signicantly contributed to the initial
effort.
There was no previous estimate of the prevalence of SBH in Ethiopia. The Norwegian
Neurosurgery Residency Director and the
author (MK) estimated that each year approximately 2500 Ethiopian babies with hydrocephalus would require operative drainage.
The program started with drainage of hydrocephalus on a few babies per week. As more
babies with hydrocephalus were shunted
(ventriculo- peritoneal (VP)), with the help of
visiting neurosurgeons from around the world,
and the news spread about the availability of
neurosurgical intervention, more cases
ooded in. Signicant problems with acquisition of VP shunts and surgical equipment
reemphasized a clear need for program expansion. In discussions with the senior visiting
and local neurosurgeons, it became obvious to
the author (MK) that this SBH Program
needed a more focused and intense organization and execution and that it needed not only
the support of the Ministry of Health, but also
a dedicated site with ORs, recovery room and
a rehabilitation service, as well as a welltrained neurosurgical and nursing staff. All
this was a tall order that required signicant
nancial support and public approval.
4. How to Focus an Effort on a Sub-Specialty
and on Specialists?
The rst thing that needed to be done after
obtaining cooperation from the hospital and
the regional health authoritieswas to initiate
an effortfocused on the specialty and specialists. This involved contacting any national or
international organizations whose interest
coincided with the interest in SBH.For shunts,
the effort began by contacting the Secretary
General of the International Federation for
Spina Bida and Hydrocephalus (IFGlobal)
which led to a long-lasting productive
cooperation.
At the same time, a small fundraising video
was created by one of the authors (MK) entitled “Ethiopia, the silent tsunami” which was
self- explanatory, provoked public interest,
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and equated SBH to a tsunami. That led to the
establishment of the ReachAnother
Foundation (RAF) by the author (MK), his
wife and his twin brother (JK), a vascular surgeon in the Netherlands, who has been an
active partner in the SBH effort for the last
12years, to the present time. The Ethiopian
neurosurgeons were all motivated to build a
new medical specialty in Ethiopia: pediatric
neurosurgery. The group collaborated with
RAF with its focus on SBH to make the defect
much more visible within the medical community, and especially to the government in
Ethiopia so as to attract support and new
patients. The trainee neurosurgeons embraced
the possibility of helping infants with
SBH. The neurosurgeons looked to RAF to
provide direct nancial, administrative, and
educational support for SBH treatment and
indirect support for their neurosurgical
training.
The Early Days ofNeurosurgery
inEthiopia
1. Recruitment of Personnel
Since the training program in Neurosurgery
was encouraged by regional authorities and
initially was based atMCM and Black Lion
Hospitals, recruitment on arotational basis of
visiting neurosurgery professors was facilitated by FIENS. RAF was instrumental in
bringing other specialist nurses, physicians,
and educators. During the next decade, untill
2020, RAF brought more than 200 specialists
from 17 different specialties. Among the rst
recruits were two Dutch physical therapists
who helped design an in-service training for
hospital nurses that was received with great
enthusiasm. All these visitors brought new
ideas and solutions that were welcomed by
the neurosurgeons as they helped to solve
their personnel, equipment, and educational
problems. It became apparent that “good
ideas” are readily accepted by the Ethiopian
partners when they understand and themselves are passionate about a problem, such as
SBH in infants, for which they wanted a
solution.
2. Empowering Nurses
To make the program functional, it was insufcient to focus only on the neurosurgeons and
administrators. The nurses constitute a critical
part of a team organized to treat a defect like
SBH, or to programmatically treat any other
surgical disease. The RAF team organized
structured courses for the nurses, such as
ATLS, and individual training in intensive
care and conscious sedation for endoscopy.
The brothers introduced instructions regarding the use of the Ambo bag and of oxygen,
and improved postoperative hypothermia by
installing space heaters. The nurses learned
better and safer techniques of independent
patient management and their monitoring,
thus assuming their responsibilities with condence. This empowerment of the nurses
helped to make the hospital safer and more
welcome to the new SBH program.
3. Development of Pediatric Neurosurgery
As stated above, the neurosurgery training
program was started in 2006 by a cooperative
agreement between Addis Ababa University
and Bergen University in Norway and funded
by the Norwegian Peace Corps. FIENS
became an active partner in recruiting faculty.
The program development has been
describedby Lund-Johansen [7] and has been
evaluated in the African context by Aswfaw
[10]. Neurosurgeon density has increased
>20-fold from 0.0022 to 0.045 neurosurgeons
per 100,000 population between 2006 and
2020.Despite recent progress, the availability
of neuroimaging equipment remains inadequate. There are in Ethiopia only 38 computed
tomography scanners and 11 magnetic resonance imaging machines for a population of
112.07 million. The geographic distribution
of neurosurgical facilities is limited to 12
urban centers [10].
As Pediatric Neurosurgery developed in the
context of the General Neurosurgery Program,
it was quickly realized that operations for
SBH represented more than 30%of the neurosurgical caseload [11, 12], and when the rst
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three neurosurgeonshad graduated from their
residencies in 2012 the Ministry of Health
designated Zewditu Memorial Hospital as the
new Pediatric Neurosciences facility. It
became the site for pediatric neurosurgery
training, consistent with RAF’s goal of “surgery by Ethiopians for Ethiopians”.This specialty designation permitted initiation of
surgery “Campaigns” allowing performance
of operations during the weekends. That initiative increased utilization of the operating
rooms and prompted operative interventions
for an additional 10–15 cases per weekend.
The partnership between RAF and the hospital has had a far-reaching effect. RAF provided nancial support for operating teams as
well as equipment and supplies. Shunts for
hydrocephalus were provided by Child Help.
In 2011 ETV (endoscopic third ventriculostomy) training for one of the neurosurgeons
was provided by CURE Neuro in Uganda
which also donated an operating endoscope
and care coordination assistance. ETV/CPC
(Chorionic Plexus Cauterization) was then
taught to all residents. The program was
evolving thanks to many contributors, mobilized by RAF and by the newly designated
pediatric neurosurgery hospital. At rst, the
operating mortality was 10% using only mask
anesthesia. After adding an anesthesiologist,
and with continuous process improvement,
mortality improved. In 2016, with dedication
and experience, a single neurosurgeon operated on 220 patients with SBH with less than
1% mortality. It was soon demonstrated that
surgery was possible for patients from even
the most remote areas of the country which
was one of the original goals of the program.
Paradigm Shift
Since follow-up after surgery was originally
inadequate, the neurosurgeons remained pessimistic about the outcomes of their operations for
SBH.Since the patients returned only when there
was a problem, the surgeons rarely saw those
who were doing well, reinforcing their negative
attitude. To address this, theReachAnother Team
started a program to make home visits and
brought back video footage of children thriving
after surgery. This created a paradigm shift
among the neurosurgeons. They now visualized
their contributions as progress by their young
patients from an expectation of near certain death
to the possibility of healthy and productive lives.
1. The Hydrocephalus Campaign.
By 2015 the program had operated on 460
patients. At that point the Team made an
ambitious 5-year plan to have each of the 25
graduating residents perform approximately
200 SBH surgeries by 2019. This
“Hydrocephalus Campaign” calculated a need
for 5000 operations for the 25 trainees. This
seemingly impossible goal was reached during the next 5years. To accomplish this RAF
raised $250,000 for the Campaign and
$750,000 for equipment and supplies to support such progress. As new neurosurgeons
populated other university hospitals throughout Ethiopia, RAF continued to support them
with supplies and instruments.
2. Center of Excellence Programs
In 2019, with SBH surgical care well established, RAF shifted its focus from training
neurosurgeons to improving aftercare and
follow-up of post-operative patients.
The SBH Program, led by the Director of St.
Peter’s Hospital, in collaboration with RAF,
launched the rst Center of Excellence
Program to get rid of the waiting list. The
needs of an SBHmulti-specialty care team and
the requirements of the training programs
were described by RAF in a Memorandum of
Understanding between the university and
RAF.The goal was to help to develop Programs
in 5 Centers of Excellence. It is projected that
each of these will provide pediatric neurosurgery for 1,000 children each year. The Center
of Excellence programs were expanded and
approved for 5 universities by 2022.
3. Focus on Multi-specialty Aftercare.
RAF further expanded the program in 2020
with an extensive Training Program for
Pediatric Neurosurgery Medical
Professionals. Drawing from many resources,
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and in close collaboration with the Children’s
Hospital of Alabama University SBH Team,
RAF created the Ethiopian SBH Team
Training Curriculum for pediatric neurosurgery. The program is based on the Spina
Bida Guidelines [13, 14] of the US Spina
Bida Association and is also accepted by IF
Global. The training is focused on developing
cohesive expert teams that are needed to provide the lifelong care spina bida patients
require. Since late 2020 the training program
has been taught at three universities in
Ethiopia with very positive results. It is slated
to be presented and initiated at 2 more universities in 2022. One of the neurosurgeons
commented that “when the nurses know the
information presented, they will know more
about SBH than anybody else but the neurosurgeons”. This is indeed the goal, so that the
SBH Team functions as “physician extenders” and can address most of the problems
that occur during the follow-up period.
In Ethiopia’s Centers of Excellence
Programs the caseloads are between 250 and
700 children per year. Management of complications, such as bladder dysfunction,
inherent to spina bida, requires early diagnosis and prompt treatment. This treatment
consists of Clean Intermittent Catheterization
(CIC) whichaims to avoid renal failure and
death [15].
Therefore, an important part of the training is
focused on CIC and on establishing responsible aftercare to prevent and/or detect urological
complications. Most universities have Pediatric
Surgeons, who, as part of their specialty, perform the needed urologic procedures.
In the multi-specialty clinics care is patientcentered and value-based; the patients are
seen during one hospital visit in the clinic by
all needed specialists. To have all specialists
come together in the outpatient clinic is a
major step forward in program development.
Fortunately, as there are now more pediatric
surgeons, pediatric orthopedists, and physical
therapists, stafng has become more
available.
4. The Need for Pediatric Rehabilitation Service.
Lack of intensive rehabilitation to address the
paralysis attendant to SBH is a major problem
for the patients and their families after successful surgery. RAF was fully aware of the
pediatric orthopedic disabilities of children
with SBH. The CURE Hospital in Ethiopia,
which had an orthopedic service with national
outreach for many years, has a woefully limited treatment capacity and long waiting lists.
Another group, Light of the World, an NGO
that works in Ethiopia, also focused on
community- based rehabilitation. Both were
available in a limited fashion because of the
enormous demand on their services and long
waiting lists. RAF was eager to help develop
additional rehabilitation services dedicated
primarily to children with SBH to try to
increase access. Through one of its founders
(JK), RAF worked with one of the principal
Dutch leaders from Nijmegen University who
developed a strong Physical Therapy program
at Gondar University. In this way RAF helped
to develop a master’s degree training project
for pediatric disability, of which SBH is a
major component. The program helped to
train a signicant number of therapists over
the next two years and continues to do so. The
physical therapy team has become one of the
most important components in one designated
specialty hospital and is now expanding to
other regions and hospitals.
The brief outline provided above demonstrates a methodical approach on “How to”
organize a specic service for a specic problem in a specic relatively small, but very
important, population of children. This
required hospital, medical, governmental, and
popular support in addition to a supervising,
organizing, recruiting, and partially funding
entity like RAF in collaboration with dedicated leaders.
The program also led to the development of a
training program for community health workers in pediatric disability described below.
The Ethiopian government decided to emphasize Rehabilitation as a priority specialty in
2021 and several facilities will come online in
the foreseeable future.
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Other Signicant Considerations
inEstablishing aMulti-Specialty
Treatment Program forSBH
1. The Problem of the Waiting List.
As neurosurgery residents graduated and
moved to other regional universities, RAF
helped them to establish their practices and to
continue their work on SBH.RAF provided
equipment and supplies so that they could
immediately begin regional SBH programs;
these programs promptly acquired a waiting
list for babies with SBH which sometimes
grew to 500 patients. As expected, this raised
many surgical issues and also many critical
ethical issues,these concerned fairness in connection with who should get treated rst –
those waiting the longest or those who were
sickest? Should those babies unlikely to survive precede those who had a much better
prognosis and who might deteriorate while
waiting? Should those who return and needed
a second operation have to wait again? Should
the rich who could pay precede those who
could not? Finally, the biggest question was
who should make such life and death decisions. Should it be the doctor, the parents, the
government, or the SBH Team? Many of these
questions have remained unanswered. As new
neurosurgeons populated other university
hospitals throughout Ethiopia, RAF continued to support them with supplies and instrumentsand in discussing these ethical issues.
2. The Difculties and the Resistance That
Needed To Be Overcome
Spina bida and hydrocephalus are complex
conditions that require problem solving at a
very high level. The mortality and complications compound the stress. Follow-up calls
made by nurses prior to their focused training
accentuated the problems and discouraged the
nurses. Lack of capacity delayed the needed
return to the hospital. As a result of such
admission delays, the infants could deteriorate, either at home, or even in the emergency
room. This was demoralizing for the patients
and for the caregivers. Imparting only strong
professional technical knowledge to care for
the patients is important, but by itself it proved
inadequate for success. It quickly became evident to RAF that to maintain a strong Team
that protects its members, the Team must be
provided with counseling and crisis
intervention.
3. Health Extension Workers (Also Known as
Community Health Workers).
Health Extension Workers (HEW) are the de
facto primary care providers in Ethiopia. Each
HEW cares for approximately 500 families.
The Community Health Workers are directed
byRegional Health Bureaus.
While the rst SBH program was focused on
the Addis Ababa region, the second one was
conducted in Bahir Dar in the Northwest of
Ethiopia. Focused on public education, it
raised awareness of SBH.Besides educating
the general population, the training focused
on HEW teaching awareness, treatment, and
referral of infants with SBH.
The program also led to the development of a
training program for community health workers in pediatric disability, of which spina
bida is a major component. This “module
18” was presented to the Ministry of Health as
“Training Module 18” and in 2019 it
wasadded to the national training program for
these health workers, vastly increasing access
to knowledge.
4. Patient Education.
The extraordinary suffering caused by spina
bida and hydrocephalus is primarily experienced by the families. As a result, the parents
have an insatiable hunger for information and
treatment plans. Parent organizations perform
a critical role in SBH care. RAF helped start
such a parent organization in Ethiopia in
2016:HOPE SBH.In response to theneed for
parent education, RAF created the HOPE SBH
Parent Handbook. The handbook is printed in
English/Amharic and English/Oromifa. Now
in its third printing, it is the unchallenged
“bestseller” for SBH care in Ethiopia. Making
such tools available will markedly strengthen
any new surgical program.
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5. Parent Organization HOPE SBH.
Another method to increase visibility and support is to directly utilize patient families as
ambassadors. In 2017, RAF helped a mother
of an infant with corrected SBH to start the
HOPE SBH parent organization and she also
created a public and professional awareness
of neural tube defects (NTD). The new organization now provides parent support and
health education, as well as counseling by
experienced parents and professionals. It
already provides, and plans to expand, accommodations for patients from distant locations
during the process of admission, after surgery,
and during follow-up if necessary. The organization now represents 3,000 member families.
It is establishing a House of Hope where families can get information and training to better
care for their children.
Building Public Awareness ofSBH
1. Working with the Ministry of Health and with
Rotary Clubs.
In 2016 RAF was introduced to the Director
of the St. Peter Specialized Hospital in Addis
Ababa. This led to a national campaign for
SBH, assisted by the government, and was the
serendipitous beginning of a very productive
relationship, outlined briey above, which
proved to be pivotal for this rst national
awareness program of SBH.It also resulted in
the advocacy for the use of folic acid as the
preventive agent for spina bida.
2. Continuing to build public awareness RAF
began working with Rotary Clubs in Addis
Ababa and in Oregon in 2017 to implement
two Rotary Global Grants for public education, training of HEW, and support for surgical treatment of SBH. The launch of the
program brought the interest of the press and
other media, including TV, which facilitated
recruitment of patients and increased general
awareness of SBH, and gradually reduced the
stigma associated. After training hundreds of
HEW, working with the neurosurgeons, and
creating a “buzz” with Radio and TV spots, a
needed national discussion about spina bida
and hydrocephalus was generated.
3. Rotary Clubs have been a consistent and inu-
ential presence in Ethiopia as they are in many
other countries. One of the important attributes of Rotary Clubs is their ability to provide access to government and political
leadership as well as to other decision makers.
Some Rotary members may have a worldwide
reach and inuence. RAF is working Rotary
Clubs worldwide toward Creating a World
Free of Spina Bida. It is this type of international effort that can only come after rst laying the groundwork for action in a small area,
in one country. Once that is achieved, progress can be made more effective by mobilizing and motivating other stakeholders,
eventually on an international scale. Ethiopian
Rotarians are a valued and indispensable
partner.
The Present Urgency forPrevention
andTreatment ofSBH is Worldwide
Since the initiation of the SBH Program nearly
10,000 children have had operations for
SBH.Since then (COVID era of 2years excluded)
public interest in SBH in Ethiopia has exploded
and resulted in increased awareness of neurosurgical interventions and greater demand for them.
This has most recently resulted in early investment in prevention of SBH with folate (folic
acid) and thus avoiding the need for operations in
the future.
1. How to Prevent SBH?
The question of prevention always has been
foremost in the mind of the scientic community. It was felt that this was fundamentally a
public health problem that deed the budgetary capacity of LMICs and of small foundations like RAF.
In 2013 there was little awareness of the
importance of folic acid in the general population [16]. Folic acid (FA) was not new in
Ethiopia. In 2004 The World Bank nanced
distribution of FA, together with iron, to all
pregnant women to prevent anemia of preg-
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nancy. As many as 76% of women in main cities receive antenatal care (ANC) and most are
prescribed folic acid with iron,with an overall
compliance of 43% [17], In outlying rural
regions this number was much lower. The
number of unattended deliveries at home was
estimated to be approximately 50% of all
deliveries [18]. The fact that folic acid is
needed before the mother knows she is pregnant is still largely unknown to the general
population [19]. Preconceptual use of folic
acid in one study was seen to be 1% [20].
To raise awareness of the critical importance
of FA for the well being of the Ethiopian population on a national level, RAF provided
training sessions to several hundred midwives
through the Ethiopian Midwives Association,
the primary delivery engine of the country.
The neurosurgeons routinely provide prescriptions for FA to all young women during
clinic visits, and advise them to take it for the
rest of their reproductive years. The compliance with this advice is not known, but likely
very low.
2. A Blood Test to Determine a Woman’sRisk of
Having a SB Pregnancy?
A randomized controlled trial in the UK
30years ago showed that spina bida is caused
by lack of dietary folic acid (FA) [20]. Since
then, food fortication by dietary FA in 56
countries worldwide has conrmed that spina
bida can be largely prevented [21]. In 2015
theWHO published blood levels of FA which
arerequired to prevent spina bida [22].
Red blood cell folate concentration distributions alone can be used to predict prevalence
of neural tube defects and a change in prevalence reects FA food fortication. A folate
concentration above 1000 nmol/L is consistent with optimal reduction in risk of folatesensitive neural tube defects [23]. A 2016
national nutrition survey by Ethiopian Public
Health Institute [24] had shown that 83% of
all women in Ethiopia do not have enough
folate in their blood to prevent spina bida.
The report clearly showed a general folate
deciency among young women that needed
to be addressed in orderto reduce and/or prevent the high occurrence of SBH in Ethiopia.
3. “Bring Me a Workable Solution”
In formulating a plan of action to treat a specic disease such as SBH the ultimate goal is
to eliminate the disease. In cases of infections
such as malaria, it may be through vaccines as
is being tried now. In case of SBH, since it
was already known that it can be prevented by
getting folic acid into the diet of women of
reproductive age prior to any of their pregnancies RAF was invited by the Ministry of
Health of Ethiopia in 2018 to “provide a
workable solution to bring folic acid to all
women of childbearing age in Ethiopia”. In
collaboration with the Center for Spina Bida
Prevention at the Rollins School of Public
Health at Emory University and the most
prominent spina bida expert in the US, Dr.
Godfrey Oakley, RAF took up the challenge.
Which food is universally used and fortiable
with folic acid was the central question. The
Team found that the only fortiable food eaten
by everyone in Ethiopia is salt and, like in
most countries in the world, salt is already
being fortied with iodine (to prevent goiter
and mental retardation). New research from
the University ofTorontoestablished that fortication of this salt with folic acid is possible,
increasing the pH to 9 by adding baking soda
[25]. This presented an ideal solution, because
the vehicle is universally used and adding folic
acid is relatively simple and inexpensive.
Following a meeting of a worldwide coalition
of experts convened by RAF, in 2019, the
Ministry of Health, in conjunction with the
Ethiopian Neurosurgical Society (SENSP)
and the Ethiopian Public Health Institute, presented a Policy Brief [26] which recommended food fortication with folic acid. This
was accepted by the Ministry of Health.
Shortly after that the Team presented a proposal for a solution to the Bill and Melinda
Gates Foundation.
4. Funding
Anticipating delays in procuring funds, RAF,
with the help of a signicant contributor, pro-
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vided funding for several preliminary studies
to be done.
These consisted of procurement of needed
folic acid, making the doubly fortied salt and
evaluating its shelf-life stability. It also led to
the evaluation of the supply chain and performance of an organoleptic study, making sure
that women will accept the salt. The salt is
now produced and is stable in Ethiopian conditions. The supply chain has been charted
and evaluated, and the salt has been found
acceptable by consumers.
In April of 2022 the Gates Foundation
announced a major implementation grant to
address National Food Fortication in
Ethiopia.
The Impact ofFood Fortication
onNeurosurgical Manpower
inEthiopia
In 2020 RAF and the Center for Spina Bida
Prevention looked at the impact of food fortication on the need for neurosurgical manpower
[27].Although the results of the major neurosurgical effort to treat SBH have been effective, it
has still been insufcient [28] At the current rate
of graduating neurosurgeons, it may not be until
2040 that all patients born alive with spina bida
will receive surgery. In contrast, food fortication is expected to show its positive effect within
one year of implementation. The authors show
that at least 38 FTE neurosurgeons will be spared
with implementation of folic acid food fortication. This estimate is low as the literature and
experience shows that spina bida and hydrocephalus for many patients requires many more
than 2 operations.
The neurosurgeons are acutely aware of the
tremendous cost of SBH. They have recently
formed the Global Alliance for Prevention of
Spina Bida-F[GAPSiF]. The F stands for folic
acid preventable. With the worldwide prevalence
of grains and rice fortied with folic acid currently to be 23%, the addition of fortication of
salt which is already iodized, would mean a90%
prevention will be achievable.
The economic burden of the disease is not
really known, but any estimates likely greatly
underestimate the true cost, let alone the tremendous personal burden of the families affected.
The authors believe that worldwide elimination
of 90% of spina bida before the end of
2030would have a profound global impact.
Conclusion
Spina bida is a complex disease which
requires more than a dozen specialists and a
well- organized multi-specialty Team. Just to
dene the necessary team itself was a major
undertaking. To teach them to interact closely
and efciently, with as little overlap as possible required patience, diplomacy, specic education, and much support from many interested
parties, starting with government and hospital
leadership. The goal and mission of this undertaking was, and remains, patient-centered care
which is of high-quality, comprehensive, with
“one stop shopping”, and which serves all the
needs of both the patient and the family. To do
that part of the Program’s mission is to save
patients and their caregivers money and frequent travel, while improving access to care
and careful follow up of patients. It is predicted
that food fortication will result in a dramaticalmost 90% drop of SB births in about two
years [15]. This will be helped signicantly by
a grant of ve million dollars for implementation of fortication of iodized salt with folic
acid provided by the Gates foundation in 2022,
The authors project that this can start in
Ethiopia in 2025, and that nearly all babies that
would have been born with SB will be born
healthy by 2029.
There is now an increased global drive to
make folic acid fortication of grains and salt
mandatory around the world [29]. With the
important work of GAPSBiF with the WHO resolution for mandatory food fortication with
folic acid, and with the new Rotary support for a
World Free of Spina Bida, such a world is possible by the end of this decade.
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References
1. Dixon M, Kancherla V, Magana T, Mulugeta A,
Oakley GP Jr. High potential for reducing folic
acid-preventable spina bida and anencephaly, and
related stillbirth and child mortality, in Ethiopia. Birth
Defects Res. 2019;111(19):1513–9.
2. Sorri G, Mesn E. Patterns of neural tube defects
at two teaching hospitals in Addis Ababa, Ethiopia,
a three years retrospective study. Ethiop Med J.
2015;53(3):119–26.
3. Berihu BA, Welderufael AL, Berhe Y, et al. High
burden of neural tube defects in Tigray, northern Ethiopia: hospital-based study. PLoS One.
2018;13(11):e0206212. https://doi.org/10.1371/jour-
nal.pone.0206212.
4. Gedefaw A, Teklu S, Tilahun Tadesse B.Magnitude
of neural tube defects and associated risk factors at
three teaching hospitals in Addis Ababa, Ethiopia.
BioMed Res Int. 2018, 10 pages; https://doi.
org/10.1155/2018/4829023.
5. Mekkonen H, Berhe Y. A silent epidemic of major
congenital malformations in Tigray, northern
Ethiopia, a hospital based study. Nature Portfolio Sci
Rep. 2021;11:21–35.
6. Healthcare spending Eth 2099. https://data.worldbank.
org/indicator/SH.XPD.CHEX.PC.CD?locations=ET
7. Meara J, Greenberg S.Lancet commission on global
surgery, global surgery 2030 evidence and solutions
for achieving health, welfare and economic development. Lancet Surg. 2015;157(5):834–5.
8. Johansen M, Leake T, Tirsti A, Munie T, Abebe M,
Sahlu A, Biluts H, Wester K.An Ethiopian training
program in neurosurgery with Norwegian support.
World Neurosurg. 2017;99:403–8.
9. Mersha A, Abat S, Temesgen T, Nebyou A.Outcome
of chronic subdural hematoma treated with single
Burr hole under local anesthesia. Ethiop J Health Sci.
2020;30(1):101–6.
10. Asfaw Z, Tirsit A, Laeke T, Park K. Neurosurgery
in Ethiopia: a new chapter and future prospects.
World J Neurosurg. 2021;152:e175–83. https://doi.
org/10.1016/j.wneu.2021.05.071.
11. Bitew Z, Worku T, Alebel A, Alemu A.Magnitude and
associated factors of neural tube defects in Ethiopia:
a systematic review and meta-analysis. Glob Pediatr
Health. 2020;7:1–14.
12. Oakley GP Jr. Classifying by cause and preventing the
many causes of spina bida and anencephaly. Pediatr
Res. 2020;87(2):183–4.
13. Guidelines for the Care of People with Spina Bida;
Spina Bida Association of America. https://www.
spinabidaassociation.org/guidelines/
14. Kancherla V, Wagh K, Johnson Q, Oakley GP Jr.
A 2017 global update on folic acid-preventable
spina bida and anencephaly. Birth Defects Res.
2018;110(14):1139–47.
15. Gethun S, Mesresha S, Zenebe E, Leke T, Tirsit
A. Four-year treatment outcomes of children
operated for neural tube defect in Addis Ababa,
Ethiopia: a retrospective study. J World Neurosurg.
2021;148:e695–702.
16. Yunus E, Abdurahman H, Assefa D, Fitsum W.Neural
tube defects and associated factors among neonates
admitted to the neonatal intensive care units in Hiwot
Fana Specialized University Hospital, Harar, Ethiopia.
Glob Pediatr Health. 2000;7:1–9.
17. Mohammed M, Bushra A, Aljadhey H, et al.
Supplement use among pregnant women in Ethiopia:
prevalence and predictors. Ther Innov Regul Sci.
2013;47:416–23.
18. Sendeku FW, Azeze GG, Fenta SL. Adherence to
iron-folic acid supplementation among pregnant
women in Ethiopia: a systematic review and metaanalysis. BMC Pregnancy Childbirth. 2020;20:138.
19. Child health and mortality prevention surveillance: a deeper dive into CHAMPS 31 March
2022. https://champshealth.org/wp- content/
uploads/2022/04/20220331- CHAMPS- DataWebinar- Slides.pdf
20. Dessie M, Zeleke E, Workie S. Folic acid usage
and associated factors in the prevention of neural
tube defects among pregnant women in Ethiopia:
cross-sectional study. BMC Pregnancy Childbirth.
2017;17:313.
21. Prevention of neural tube defects: results of the
Medical Research Council Vitamin Study. Ethiop J
Health Sci. 2020;30(1):101–6.
22. Blencowe H, Kancherla V, Moorthie S, Darlison MW,
Modell B. Estimates of global and regional prevalence of neural tube defects for 2015: a systematic
analysis: worldwide neural tube defects: estimates for
2015. Ann N Y Acad Sci. 2018;1414(1):31–46.
23. Cordero AM, Crider KS, Rogers LM, Cannon MJ,
Berry RJ. Optimal serum and red blood cell folate
concentrations in women of reproductive age for
prevention of neural tube defects: World Health
Organization guidelines. MMWR Morb Mortal Wkly
Rep. 2015;64(15):421–3.
24. Crider K, Devine O, Dowling N, Li Z, Berry R, etal.
Population red blood cell folate concentrations for
prevention of neural tube defects: Bayesian model.
BMJ. 2014;349:g4554.
25. Ethiopian Public Health Institute- Demographic
and health survey, Central Statistical Agency Addis
Ababa, Ethiopia; 2016. p.123–126.
26. McGee E, Sangakkra A, Diosady L.Double fortication of salt with folic acid and iodine. J Food Eng.
2017;198:72e80. published online
27. Ethiopian Public Health Institute - PHI Policy
Brief 2019. Nutrition International. https://
www.nutritionintl.org/learning- resource/
policy- briefpreventing- neural- tube- defects- inethiopia- large- scale- mandatory- food- fortificationurgently- needed/
7 How to Build Pediatric Neurosurgical Capacity Practice in Low- and Middle-Income Countries and…
https://t.me/medicina_free
85
28. Kancherla V, Koning J, Biluts H, et al. Projected
impact of mandatoryfoodforticationwith folic acid
on neurosurgical capacity needed for treating spina
bida in Ethiopia. Birth Defects Res. 2020;113:393.
https://doi.org/10.1002/bdr2.1857.
29. Kancherla V, Tsang B, Wagh K, Dixon M, Oakley
GP Jr. Modeling shows high potential of folic acidfortied salt to accelerate global prevention of major
neural tube defects. Birth Defects Res. 2020:1–14.
https://doi.org/10.1002/bdr2.1769.
30. Caceras A, Blount J, Messing-Junger M, Chatterjee
S, Fieggen G, Salomao J.The International Society
for Pediatric Neurosurgery resolution on mandatory
folic acid fortication of staple foods for prevention of spina bida and anencephaly and associated
disability and child mortality. Childs Nerv Syst.
2021;37(6):1809–12.
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