A Summer Study Experience on Clinical Care and Prevention Policy for Spina Bifida in Ethiopia

by Amanda Dorsey, BS, (MPH Candidate) and Vijaya Kancherla, PhD, Department of Epidemiology, Emory University Rollins School of Public Health

Amanda Dorsey and Vijaya Kancherla with the COE neurosurgery team at Zewditu Memorial Hospital, Addis Ababa, Ethiopia

Last summer in the pediatric neurosurgical wards of Addis Ababa, the capital city of Ethiopia and sprawling metropolis with a population of 5.2 million, we, Ms. Amanda Dorsey (MPH Candidate) and Dr. Vijaya Kancherla (Assistant Professor), from the Department of Epidemiology at Emory University, had an incredibly rich experience in the field of spina bifida research, prevention, and care. This experience sheds light on global birth defects, which we felt was beneficial to share with other BDRP members and trainees through this blog. More importantly, this experience was made possible by the life work of another Society member whom we wish to recognize and honor, the late Dr. Marinus Koning, Director of ReachAnother Foundation, a non-governmental organization invested in the clinical care and prevention of spina bifida in Ethiopia.

The project that we undertook was conducted in collaboration with ReachAnother Foundation and supported by the Emory University Rollins School of Public Health Global Field Experience Financial Award (a grant for public health graduate students to pursue at least 6 weeks of global epidemiology research in low- and middle-income countries). We were collaboratively conducting a program evaluation for ReachAnother Foundation’s care and prevention programs in several hospitals in Ethiopia, where the Foundation established multiple Centers of Excellence (COE) in pediatric neurosurgical care. At each location, the Foundation has built neurosurgical capacity to treat spina bifida and hydrocephalus patients and provide follow-up care for the children.

The prevalence of neural tube defects in Ethiopia is very high. In absolute numbers, there are about 10,500 babies born with spina bifida in Ethiopia each year. Very few make it to their fifth birthday, with a huge disparity in outcomes based on family income and the availability of surgical resources. The time window to treat a newborn with spina bifida for optimal outcomes is very short, and few are able to access surgery in a timely manner, which is exclusively available in bigger cities.

ReachAnother Foundation has been doing exceptional work in Ethiopia since 2006, training neurosurgeons to provide spina bifida closure surgeries, manage hydrocephalus, and deliver multidisciplinary care for the whole family. The Foundation also recently set up a database to document outcomes among babies who received care for spina bifida or hydrocephalus. Each of their COE works with the database, entering detailed data on spina bifida and hydrocephalus patient encounters and surgical care indicators. Additionally, they created a pediatric neurosurgery training program for nurses to contribute to the multidisciplinary care of their patients.

We had the opportunity to assist the ReachAnother Foundation by evaluating their initiatives in each COE in collaboration with local partners. We evaluated the database of one tertiary care center located in Addis Ababa, which included over 1,100 patients. Based on the available data, we, alongside local collaborators, conducted an epidemiological study on the timeliness of myelomeningocele closure surgery among spina bifida patients treated at the hospital. We interviewed the physicians and staff on the strengths and challenges of the database. We also studied folic acid prescription practices to prevent recurrence of spina bifida.

It was humbling to learn how tirelessly the healthcare professionals in the pediatric neurosurgery wards work with their patients at the forefront of their priorities. This included the neurosurgeons, general practitioners, nurses, care coordinators, and more. But still, the number of spina bifida patients in Ethiopia surpasses the country-wide neurosurgical capacity, warranting further resources and training. In addition to a big push for training more doctors and increasing surgical care, Ethiopia has recently approved mandatory folic acid fortification of wheat flour to prevent the majority of neural tube defects.

In focus group interviews with pediatric neurosurgery nurses, we learned that the nurses took great pride in encouraging mothers to take their folic acid pills to prevent a subsequent pregnancy with spina bifida. Signs and promotional materials about folic acid were posted all around the hospitals for new and pregnant mothers to see; however, there is a need to strengthen recurrence prevention programs that provide mothers who are at a high risk for having a subsequent pregnancy impacted by spina bifida with a higher dose of folic acid (4,000 mcg/day) consistently.

This was an amazing learning and mentoring experience for us, while we both also learned from our Ethiopian colleagues in a short span of 6 weeks on the ground in Ethiopia. Many lessons were learned on global health advocacy that surpass the realm of textbooks and can only be gained through thorough formative work and total immersion with close local partnerships and collaborations. There were hardworking doctors, nurses, and healthcare professionals providing unconditional care for patients and their families with whatever resources they could. Some of the nurses went to the extent of setting up a fund or donating a part of their salary to support mothers.

We are inspired by the opportunities for improvement and further research related to spina bifida care and prevention in Ethiopia. We built partnerships and friendships with Ethiopian colleagues that are fundamental to effective work in public health. The summer study turned into a rich student-mentor engagement loaded with insights on global birth defects research and prevention, fruitful collaborations with the team in Ethiopia, and many lessons on the strengths and perseverance of people involved in global birth defects work.

About the Society for Birth Defects Research and Prevention

Healthy pregnancies. Healthy babies. Better lives.

The mission of the Society for Birth Defects and Prevention (BDRP) is to understand the cause and pathogenesis of disorders of developmental and reproductive origin to prevent their occurrence and improve outcomes through research, collaboration, communication, and education.

Scientists interested in or already involved in research related to topics mentioned in this blog are encouraged to join BDRP and attend the 63rd Annual Meeting taking place June 24–28, 2023, in Charleston, South Carolina. BDRP is a multidisciplinary society of scientists from a variety of disciplines including researchers, clinicians, epidemiologists, and public health professionals from academia, government, and industry who study birth defects, reproduction, and disorders of developmental origin. Our members include those specializing in cell and molecular biology, developmental biology and toxicology, reproduction and endocrinology, epidemiology, nutritional biochemistry, and genetics, as well as the clinical disciplines of prenatal medicine, pediatrics, obstetrics, neonatology, medical genetics, and teratogen risk counselling. BDRP publishes the peer-reviewed scientific journal, Birth Defects Research. Learn more at http://www.birthdefectsresearch.org. Find BDRP on LinkedIn, Facebook, Twitter and YouTube.