Tanzania Birth Defects Program: The Gift of a Healthier Start in Life

The phrase “scientia potentia est” is a Latin aphorism meaning “knowledge is power”. This quote, commonly attributed to Sir Francis Bacon, has proven to be more than just words during the 8 years of execution of the Tanzania Birth Defects Surveillance Program, one of the most satisfying career endeavors to all their participants. In its conception, The Tanzanian Ministry of Health, Community Development, Gender, Elderly and Children (MOHCDGEC) in support of CDC established a facility-based birth defect surveillance system for selected major external birth defects with goals to detect and estimate the magnitude of birth defects, assist to plan for prevention strategies, improving the quality of life of affected individuals and families, and assist to evaluate the impact of ongoing mandatory food fortification.

Vysnova was awarded the Cooperative Agreement to support this effort in 2017, however, this program first started in 2014 by establishing grounds and systems which included stakeholders’ engagement and training to health care workers. The system has been established in five districts namely Ifakara Town Council (TC), Kilombero/Mlimba District Council (DC), Kahama Municipal Council (MC), Mbulu DC, and Mbeya City Council. 

 Back in 2015, Tanzania had no system for estimation of the burden of birth defects. The birth defects birth prevalence estimate depended on the mathematical modeling by the March of Dimes. Since the implementation of the birth defect program, the country developed the capability to estimate the birth prevalence rate by real data collected from the five (5) Councils which were selected from various zones. Since its inception, the birth prevalence of major structural birth defects is estimated at approximately 2 per 1,000 total births. 

Through the existence of the program, awareness of birth defect prevention and care has increased tremendously among health care workers and the community in general for the participating councils. 

In the past, it was normal practice for parents to continue keeping their newborns with birth defects at home without attending the medical treatment and care prescribed. These efforts led to newborns with birth defects being linked to more specialized medical care without their parents denying them the services and to related associations whereby they were being supported to travel their newborns for medical treatment and care. 

Once the knowledge was handed to the people not only to identify but for them to prevent and this shifted the dynamics, allowing them to be in more control of their health and of one of those new lives they were bringing. Knowledge allowed these babies a fairer start, regarding their health.  

Participating districts and regions had inadequate knowledge on birth defect surveillance. Significant skills have been acquired by these health care workers after several capacity-building training, cascading training, and mentorship. The surveillance system had made some of the health care experts build interest in epidemiology and disease surveillance. For instance, Dr. Gwakisa John who was formerly the Morogoro regional birth defect coordinator and now at the Ministry as a medical epidemiologist, he once reiterated that;

 “I never had thought of being an epidemiologist till when I was engaged in birth defect surveillance activities in Morogoro region and met some of the CDC experts including Dr. Jenny Williams who had really encouraged me to pursue my carrier in epidemiology training which would improve my performance as birth defect surveillance regional coordinator. With the support of Ministry of Health experts including Dr. Rogath Kishimba, I was able to build interest and later become one among epidemiologists serving the Ministry”  

The district birth defect focal person for Kilombero/Mlimba district he also reiterated that;

I have been working in the district for many years but I had never been recognized as one of the key experts in the council. It is until when I was engaged with birth defect surveillance the district had recognized my potentials and I had opportunities to continue developing my surveillance skills. My engagement in several national and global birth defect activities made me proud of being part of the national and global birth defect network”.

 The program became a key in monitoring Dolutegravir (DTG) an antiviral drug for HIV/AIDS that has shown to cause birth defects for pregnant women. Tanzania as other many countries switched the HIV/AIDS treatment guidelines to include DTG as a first-line treatment for people living with HIV/AIDS. The Ministry of Health is planning to scale up the program and include all regional referral hospitals (RRHs). The program has engaged Ministry of Health leaders who are now taking part in resource mobilization efforts to expand the program to include RRHs and ensure sustainability through linking to 3rd Edition electronic Integrated Disease Surveillance and Response (eIDSR).

Dr. Gwakisa John disseminating the birth defect information/data at St Francis Hospital in Ifakara TC.

With a fair amount of nostalgia, Vysnova, CDC, and The Tanzanian Ministry of Health, Community Development, Gender, Elderly, and Children, are saying farewell to its collaboration this month. The work that started in 2014 has impacted the lives of thousands, but more significantly, it has built the ground for sustainable activities in the area, that look forward to developing a network of well-being for mothers and newborns, that will give them the gift of a happy childhood, through the power of health knowledge.

By: Dr. Rogath Saika Kishimba, MD, MSc – Medical Epidemiologist- MOHCDGEC

Nohelia Navarrete, MBA, MPA- Program Director- Vysnova