Neural tube defects as a cause of death among stillbirths, infants, and children younger than 5 years in sub-Saharan Africa and southeast Asia: an analysis of the CHAMPS network
Lola Madrid, Kartavya J. Vyas, Vijaya Kancherla, Haleluya Leulseged, Parminder S. Suchdev, Quique Bassat, Samba O. Sow, Shams El Arifeen, Shabir A. Madhi, Dickens Onyango, Ikechukwu U. Ogbuanu, J. Anthony G. Scott, Dianna M. Blau, Inácio Mandomando, Adama Mamby Keita, Emily S. Gurley, Sana Mahtab, Victor Akelo, Sulaiman Sannoh, Yenenesh Tilahun, Rosauro Varo, Uma Onwuchekwa, Afruna Rahman, Yasmin Adam, Richard Omore, Sandra Lako, Elísio Xerinda, Kazi Munisul Islam, Amy Wise, Beth A. Tippet-Barr, Erick Kaluma, Sara Ajanovic, Karen L. Kotloff, Mohammad Zahid Hossain, Portia Mutevedzi, Milagritos D. Tapia, Emily Rogena, Francis Moses, Cynthia G. Whitney, Nega Assefa, ASM Nawshad Uddin Ahmed, Mahbubul Hoque, Mohammed Kamal, Mohammad Mosiur, Ferdousi Begum, Saria Tasnim, Meerjady Sabrina Flora, Farida Arjuman, Iqbal Ansary Khan, Tahmina Shirin, Mahbubur Rahman, Sanwarul Bari, Shahana Parveen, Farzana Islam, Mohammad Zahid Hossain, Kazi Munisul Islam, Mohammad Sabbir Ahmed, Khalequ Zaman, Mustafizur Rahman, Dilruba Ahmed, Md Atique Iqbal Chowdhury, Muntasir Alam, Kyu Han Lee, Ferdousi Islam, Joseph Oundo, Fikremelekot Temesgen, Melisachew Mulatu Yeshi, Alexander M. Ibrahim, Tadesse Gure, Yunus Edris, Addisu Alemu, Dadi Marami, Ephrem Lemma, Ayantu Mekonnen, Henok Wale, Tseyon Tesfaye, Haleluya Leulseged, Tadesse Dufera, Anteneh Belachew, Fentabil Getnet, Surafel Fentaw, Yenework Acham, Stian MS Orlien, Mahlet Abayneh Gizaw, Emily Rogena, Florence Murila, Gunturu Revathi, Paul K Mitei, Magdalene Kuria, Jennifer R. Verani, Aggrey Igunza, Peter Nyamthimba, Elizabeth Oele, Karen D. Fairchild, Carol L. Greene, Rima Koka, Ashka Mehta, Sharon M. Tennant, Jennifer Johnson, Tatiana Keita
Abstract
BACKGROUND: Neural tube defects are common birth defects resulting in severe morbidity and mortality; they can largely be prevented with periconceptional maternal intake of folic acid. Understanding the occurrence of neural tube defects and their contribution to mortality in settings where their burden is highest could inform prevention and health-care policy. We aimed to estimate the mortality attributed to neural tube defects in seven countries in sub-Saharan Africa and southeast Asia. METHODS: This analysis used data from the Child Health and Mortality Prevention Surveillance (CHAMPS) network and health and demographic surveillance systems from South Africa, Mozambique, Bangladesh, Kenya, Mali, Ethiopia, and Sierra Leone. All stillbirths and infants and children younger than 5 years who died, who were enrolled in CHAMPS, whose families consented to post-mortem minimally invasive tissue sampling (MITS) between Jan 1, 2017, and Dec 31, 2021, and who were assigned a cause of death by a determination of cause of death panel as of May 24, 2022, were included in this analysis, regardless the cause of death. MITS and advanced diagnostic methods were used to describe the frequency and characteristics of neural tube defects among eligible deaths, identify risk factors, and estimate the mortality fraction and mortality rate (per 10 000 births) by CHAMPS site. FINDINGS: Causes of death were determined for 3232 stillbirths, infants, and children younger than 5 years, of whom 69 (2%) died with a neural tube defect. Most deaths with a neural tube defect were stillbirths (51 [74%]); 46 (67%) were neural tube defects incompatible with life (ie, anencephaly, craniorachischisis, or iniencephaly) and 22 (32%) were spina bifida. Deaths with a neural tube defect were more common in Ethiopia (adjusted odds ratio 8·09 [95% CI 2·84-23·02]), among female individuals (4·40 [2·44-7·93]), and among those whose mothers had no antenatal care (2·48 [1·12-5·51]). Ethiopia had the highest adjusted mortality fraction of deaths with neural tube defects (7·5% [6·7-8·4]) and the highest adjusted mortality rate attributed to neural tube defects (104·0 per 10 000 births [92·9-116·4]), 4-23 times greater than in any other site. INTERPRETATION: CHAMPS identified neural tube defects, a largely preventable condition, as a common cause of death among stillbirths and neonatal deaths, especially in Ethiopia. Implementing interventions such as mandatory folic acid fortification could reduce mortality due to neural tube defects. FUNDING: Bill & Melinda Gates Foundation.