Safeguarding Tomorrow's Promise – A Holistic Approach to Preventing and Managing Birth Defects for SDG Triumph in Neonatal and Child Mortality in Sri Lanka
Global scenario
Birth defects are structural or functional anomalies that occur during intrauterine life and can be identified during pregnancy, at birth, or sometimes may only be detected later. Globally an estimated 8 million newborns are born with birth defects (BD) annually. It is estimated that about 94 percent of severe congenital disorders occur in low- and middle-income countries. Heart defects, neural tube defects and Down syndrome are considered as the most common severe congenital disorders1. It is often difficult to identify the exact causes, it is speculated that congenital disorders may be the result of genetic, infectious, nutritional or environmental factors acting alone or synergistically.
Regional Landscape
In WHO South-East Asia Region (SEAR), birth defects are the
third highest cause of child mortality and fourth most common cause of neonatal
mortality while the same contribute for more than 20 percent of under-five
mortality.
The impact of birth defects extends far beyond individual cases, becoming a pivotal determinant in the collective effort to achieve Sustainable Development Goals (SDGs). These congenital anomalies play a crucial role in the overarching goal of ending preventable deaths among newborns and children under-five years of age by 2030, as outlined in the SDGs. Additionally, they hold significance in aligning with targets set by the "Every Newborn Action Plan" (ENAP)2
Since 2014, WHO SEARO has supported all countries to drive rapid sustained reductions in maternal, newborn and child mortality which included targeted actions to prevent, detect and manage birth defects. Almost all Member States have started hospital-based birth defect surveillance systems. All countries have initiated Rubella Vaccination while Maldives and Sri Lanka have eliminated Rubella.
Sri Lankan context
In the realm of child health, addressing birth
defects has emerged as a critical priority. Recent WHO Sri Lanka supported
analysis on national feto-infant mortality data (2017-2019) revealed a
significant correlation, as the commonest underlying cause, attributing to 39.1
percent of infant deaths to birth defects. These statistics indicate that
approximately 5 000 to 6 000 children are born with a birth defect each year in
Sri Lanka. Research shows Congenital Heart Defects (CHD) (24 percent), limb
deformities (20.3 percent), Cleft Lip and Palate (CLP) (8.5 percent),
chromosomal abnormalities (6.7 percent), and Neural Tube Defects (NTD) (59
percent) as the leading causes of BD4.
Figure 1: Underlying Cause of Death of infant deaths (2017-2019)
Source: WHO Report on In-depth Analysis of feto-infant mortality surveillance, Sri Lanka (2017 – 2019)
Sri Lanka has taken a series of efforts to implement WHO recommended evidence-based interventions to prevent, detect and care for children with BD including establishment of a web-based hospital birth defect surveillance system. The package for newly married couples delivered by field health staff consists of preconception screening, care and counselling services and includes screening for genetic disorders and other diseases and folic acid supplementation.
Adolescents are provided with weekly iron and folic acid supplementation
targeting both in school and out of school adolescents. Measures were taken to introduce rice
fortified with iron and folic acid under the school meal programme on a pilot
basis.
The limited financial and human resources together with
scarcity of available medical supplies especially following the aftermath of
the economic crisis pose significant challenges to the implementation of
effective birth defect surveillance, prevention, and care programs in Sri Lanka
hampering the expected reduction in neonatal and child mortality due to birth
defects.
Next steps
WHO Sri Lanka provided the technical and financial support
to the Ministry of Health to design the National Strategic Plan on Birth
Defects Surveillance, Prevention and Care (2024-2030) with a team of experts
from the Faculty of Medicine, University of Colombo, Sri Lanka.
The proposed National Strategic Plan on Birth Defects Surveillance,
Prevention and Care (2024-2030) focusses on several strategic dimensions
namely, (1) to establish or strengthen
national policies and programmes for BD prevention and control; (2) to develop
and strengthen national BD surveillance;
(3) to strengthen BD prevention strategies by integrating into public
health, nutrition and other relevant programmes, as appropriate; (4) to expand
and strengthen national capacity for implementation of BD prevention and
control programmes and research; and (5) to develop and expand national,
regional and international multi-sectoral partnerships and networks to support
BD prevention and control programmes.
Increasing support for parents and caregivers to improve
disability care is a vital and becoming more important in the present resource
limited environment in the country. Health staff should better connect with
affected families and communities and empower them to access and utilize available health and
other support services.
Addressing the gaps in the existing health
system and challenges posed by the present economic downturn requires a
concerted effort from all stakeholders involved in the birth defect
surveillance, prevention, and care. It is essential to widely disseminate the strategy
to address the said challenges
Fig 2: Care pathway describing National BD surveillance system, Sri Lanka
Source: Family Health Bureau, Ministry of Health, Sri Lanka
1 WHO (2023); Fact sheet on Congenital Disorders - https://www.who.int/news-room/fact-sheets/detail/birth-defects
2 WHO (2014); Every Newborn Action Plan - https://www.who.int/initiatives/every-newborn-action-plan
3 WHO (2016); WHO recommendations on antenatal care for a positive pregnancy experience - https://www.who.int/publications/i/item/9789241549912
4 Sirisena, N. D., & Dissanayake, V. H. W. (2019). Genetics and genomic medicine in Sri Lanka. Molecular Genetics & Genomic Medicine, 7(6), e744. https://doi.org/10.1002/mgg3.744
5 WHO (2022); WHO recommendations on maternal and newborn care for a positive postnatal experience - https://www.who.int/publications/i/item/9789240045989