Newborn Birth Defects Surveillance (NBBD)

Establishment of National Neonatal Perinatal Database and Surveillance of Birth Defects in Bangladesh:

A Successful Initiative   

Despite commendable progress in reducing child mortality over past decades, neonatal mortality in Bangladesh is declining slowly over the years. Thus, improvement in neonatal-perinatal survival is one of the priority health agenda in Bangladesh. Neonatal mortality and morbidity from perinatal asphyxia, prematurity and sepsis are becoming well addressed hence mortality from birth defect is mounting as a public health concern worldwide. Birth defects or congenital anomalies are a major cause of perinatal and neonatal death. It is estimated that, at birth 1 in 33 infants has a birth defects ; globally it is 4.8 million. Around 3.2 million of those who survive from birth defect may have lifelong mental, physical, auditory or visual disability. Birth defects can be defined as structural or functional anomalies, including metabolic disorders which are present at the time of birth but may or may not be diagnosed at the time of birth (WHO Fact Sheet, 2013). Some of the congenital anomalies may be life threatening, may impair function or interfere with the cosmetic value, hence an immediate management is required. About 60% of the causes of congenital anomalies in humans are still unknown. However, in about 25% of congenital anomalies, the causes seem to be “multifactorial”, indicating a complex interaction between genetic and environmental risk factors. A wide range of environmental risk factors have been associated with the occurrence of congenital anomalies like maternal age, obesity, illness, micronutrient (Folic acid ) deficiency, tobacco and alcohol use.

A reliable database is a fundamental pre-requisite for planning, implementing and monitoring the health care programs to ensure an accurate and ongoing assessment of the morbidity and mortality. Considering the situation National Neonatal Perinatal database (NNPD) was established in 2013 as a continuation of the WHO-SEARO database. The project was intended to commence Neonatal Perinatal Database (NNPD) in the referral hospitals of Bangladesh with the objective to set up a network for collection of neonatal perinatal data for better understanding of epidemiology of neonatal diseases including birth defects. Later on considering the importance of surveillance of birth defect, it was strengthened as NNPD-BD surveillance. Very recently the project has expanded to ‘Newborn Birth Defect (NBBD) in Bangladesh’  supported by World Health Organization and DGHS, Ministry of health and family welfare, Bangladesh for better understanding of epidemiology and to develop strategic framework for the care and prevention of birth defect in this region.

Since commencement of the project national consultative meeting, advocacy meeting with Ministry of Health Bangladesh and development partner, capacity building through training of trainer and refresher training has been conducting by the department of Neonatology, Bangabandhu Sheikh Mujib Medical University (BSMMU) as a network coordinator. Meetings and trainings are being enriched by principle investigator, resource persons from home and abroad, representatives from all the participating institutes, Govt and Non Govt organizations, Development partners, professional bodies and other stake holders. Data presentations from different participating institutions were the key agenda and sharing of views and limitations were the most important features of the regular review meetings.  Continuous liaison with DGHS and development partners by the nodal center has been successful by achieving the goal of incorporation of the NNPD variables with national MIS.

Bangabandhu Sheikh Mujib Medical University has been participating as a nodal centre since its mission towards improvement of newborn health. Data from inborn and outborn live birth as well as birth defects are collecting up to date. Limitations and challenges are remaining regarding data entry personnel, IT problems, quality assurance of data entry, co-ordination with participating institutions. To fulfill the existing gap of National Neonatal-Perinatal Database (NNPD), a project has proposed recently to strengthen the existing database involving the selected institutes by ensuring timeliness, correctness and completeness of data. Project is intended to send data to DGHS and WHO country and SEARO for further analysis and also to compare with other regional countries.

Limitations and challenges are remaining regarding quantity and quality of data of all deliveries, cooperation of department of obstetrics and gynecology, high work load, supervision, monitoring of the participating centers and regular reviewing of database. Despite many challenges, this project has been ongoing to reveal the current scenario of birth defect in the hospitals. A nationwide neonatal network will be developed through surveillance of birth defects project in every levels of health facility in the country. This will enable the health system to have a current picture of the neonatal perinatal situation in the country.

Considering the importance of birth defect surveillance, this project has been extended as Strengthening and Expansion of Newborn Birth Defect (NBBD) Surveillance in Bangladesh from February, 2022. Total 20 centers including one medical university (BSMMU), 13 medical colleges (7 from Dhaka, 6 from outside Dhaka), 2 institutes (MCHTI, ICMH), 3 Private hospitals (BIRDEM, United Hospital Ltd. and Central Hospital Ltd.) and one military hospital (CMH) were working together in this project to reach the goal and objective.

List of Participating Institutes:

List of hospital for reporting birth defects only: