{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,16]],"date-time":"2026-10-16T22:14:40Z","timestamp":1792188880478,"version":"4.4.0"},"reference-count":61,"publisher":"MDPI AG","issue":"16","license":[{"start":{"date-parts":[[2025,8,13]],"date-time":"2025-08-13T00:00:00Z","timestamp":1755043200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Havey Global Health Institute Student Research Grant"},{"name":"Northwestern Medicine Department of Neurological Surgery Medical Student Research Program Grant"},{"name":"University of Iowa Department of Neurosurgery"},{"name":"Northwestern University Robert J. Havey, MD IGH Catalyzer Award 1048G"},{"name":"Mark Gilbert and Karen Simmonds Research Gift Fund"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JCM"],"abstract":"<jats:p>Background: Congenital anomalies impact 52 million infants worldwide with an estimated 94% living in low- and middle-income countries (LMICs). Approximately 200,000 children are born with a neural tube defect (NTD) in LMICs annually. Zambia is an LMIC with a high burden of myelomeningocele (MMC; a severe form of NTD). This study sought to characterize the barriers influencing access to healthcare for children born with MMC in Zambia. Methods: Two cross-sectional surveys were administered to healthcare providers at referring public health facilities and mothers of infants born with MMC undergoing surgical closure. The survey among mothers was nested in a longitudinal study evaluating surgical closure in Lusaka, Zambia from 28 May 2024 to 21 January 2025. Results: Sixty-nine mother\u2013MMC baby dyads and 123 providers from 21 facilities were enrolled in the study. The median age at presentation for MMC was 7.5 (range 0\u2013244) days old. Most patients were referred from rural district hospitals (51%; n = 35) and travelled greater than 250 km to access care (80%; n = 55). Seventy-seven percent (n = 53) of mothers reported receiving at least one antenatal ultrasound, with 62% (n = 43) undergoing an ultrasound after 20 weeks estimated gestational age. Of these, only 3% (n = 2) received an MMC diagnosis prior to delivery. Referring patients with MMC for further care greater than six hours after birth was reported by 59% providers (n = 73). Hospitals further away from the tertiary center were more likely to report late referrals (p &lt; 0.001). Conclusions: There is a delay in the diagnosis and referral of infants with MMC to specialized care in Zambia, which may be attributed to inadequate in utero diagnosis capabilities and distance from the tertiary facility. Improving the accuracy of prenatal diagnosis and strengthening referral pathways to facilitate access to care among infants with MMC in Zambia are important for improving incidence and outcomes.<\/jats:p>","DOI":"10.3390\/jcm14165721","type":"journal-article","created":{"date-parts":[[2025,8,13]],"date-time":"2025-08-13T07:45:31Z","timestamp":1755071131000},"page":"5721","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Barriers to Timely Referral of Children Born with Myelomeningocele in Zambia"],"prefix":"10.3390","volume":"14","author":[{"ORCID":"https:\/\/orcid.org\/0009-0007-9220-6573","authenticated-orcid":false,"given":"Rya","family":"Muller","sequence":"first","affiliation":[{"name":"Department of Neurosurgery, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kabelele","family":"Sipalo","sequence":"additional","affiliation":[{"name":"Division of Neurological Surgery, Department of Surgery, University Teaching Hospitals\u2014Adult Hospital, Lusaka 10101, Zambia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Caitlyn","family":"Beals","sequence":"additional","affiliation":[{"name":"Carver College of Medicine, University of Iowa, Iowa City, IA 52242, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela","family":"Chazura","sequence":"additional","affiliation":[{"name":"House of Hope Spina Bifida Hydrocephalus Foundation, Lusaka 10101, Zambia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stephanie","family":"Chola","sequence":"additional","affiliation":[{"name":"House of Hope Spina Bifida Hydrocephalus Foundation, Lusaka 10101, Zambia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Roxanna","family":"Garcia","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brooks","family":"Jackson","sequence":"additional","affiliation":[{"name":"Department of Pathology, University of Iowa Hospitals and Clinics, Iowa City, IA 52242, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3665-8897","authenticated-orcid":false,"given":"Joseph","family":"Feinglass","sequence":"additional","affiliation":[{"name":"Division of General Internal Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7152-8473","authenticated-orcid":false,"given":"Kirill V.","family":"Nourski","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, University of Iowa Hospitals and Clinics, Iowa City, IA 52242, USA"},{"name":"Iowa Neuroscience Institute, University of Iowa, Iowa City, IA 52242, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marie-Renee","family":"Mala Wa Mpoyi","sequence":"additional","affiliation":[{"name":"Neonatal Intensive Care Unit, University Teaching Hospitals\u2014Women and Newborn Hospital, Lusaka 10101, Zambia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Humphrey","family":"Kunda","sequence":"additional","affiliation":[{"name":"Division of Neurological Surgery, Department of Surgery, University Teaching Hospitals\u2014Adult Hospital, Lusaka 10101, Zambia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3571-7573","authenticated-orcid":false,"given":"Rebecca","family":"Reynolds","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, University of Iowa Hospitals and Clinics, Iowa City, IA 52242, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2025,8,13]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"e067033","DOI":"10.1136\/bmjopen-2022-067033","article-title":"Systematic estimates of the global, regional and national under-5 mortality burden attributable to birth defects in 2000-2019: A summary of findings from the 2020 WHO estimates","volume":"13","author":"Perin","year":"2023","journal-title":"BMJ Open"},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"102873","DOI":"10.1016\/j.eclinm.2024.102873","article-title":"The global, regional, and national patterns of 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