Childhood Disability in Sub-Saharan Africa

2 November 2023

The Convention on the Rights of Persons with Disabilities sets out how disability stems from the interaction between physical and mental impairments and an unaccommodating environment, the biopsychosocial model of disability. Children with congenital anomalies in sub-Saharan Africa live with considerable stigma that leads to exclusion from participation in community life. They experience late and inadequate access to surgery which leads to higher levels of physical impairment, associated in turn with higher potential for stigma and exclusion, as well as lower survival than their peers in high income countries.
In this webinar, we bring together for discussion UNICEF’s data on child disability in Africa, the Global Burden of Disease project’s estimations of disability due to congenital anomaly in Africa and how this could be reduced by improving access to surgical services, and research on participation of children with disabilities due to congenitalanomalies in Africa.

Advocacy for congenital disorders and rare diseases in Sub-Saharan Africa: an expert discussion

31 August 2023
Health advocacy relates to activities that help patients access and navigate healthcare, influence healthcare policies and create systemic change to address health inequalities. Rare diseases (RD) and congenital disorders (CD) are often overlooked and misunderstood, leading to delayed diagnosis/misdiagnosis, limited allocated resources, and inadequate support for those impacted. The majority of global deaths due to CD/RD in children under 5 are seen in low- and middle-income countries (LMIC), with those in Sub-Saharan Africa (SSA) facing the greatest risk. There is an urgent need to build capacity and expertise and to strengthen healthcare related to CD/RD. In this webinar, a panel of key advocacy stakeholders participate in a guided discussion regarding advocacy for rare diseases and congenital disorders in SSA.

Congenital Heart Defects in Sub-Saharan African Countries

16 July 2023
Congenital heart defects (CHD) constitute almost a third of all congenital anomalies. Despite the challenge of underdiagnosis, sub-Saharan Africa has the highest birth prevalence of CHD in the world, and low- and middle-income countries contribute 77% of all global deaths due to CHD. Advances in pediatric cardiology and cardiac surgery, including the introduction of pulse oximetry for CHD screening and echocardiography for accurate diagnosis, have increased the survival rate of children with CHD by 95%. Unfortunately, such services are often lacking or prohibitively expensive in Africa where the majority of affected children (over 90%) do not receive appropriate care. The lack of diagnostic capacity results in high rates of missed and late CHD diagnoses, further limiting survival. In this webinar we discuss the challenges of CHD in sub-Saharan Africa and present recent prevalence, experience and best practice from the region, including the value of CHD screening with pulse oximetry in low resource, primary care settings.

Community Screening Strategies to Improve Equitable Access in Diagnosis and Management of Birth Defects: Lessons from Low and Middle-Income Countries

11 May 2023
Congenital anomalies significantly contribute to under-5 mortality and morbidity in sub-Saharan Africa. Early identification allows for proper management and planning of intervention with possible improved outcomes. A recent systematic review on surgically correctable anomalies found birth defect screening and surveillance programs missing or only just developed in Low and lower-middle-Income countries. This webinar highlights the existing congenital anomaly screening programs, emphasising community screening strategies in low and middle-income countries.

Neural Tube Defects in sub-Saharan Africa

12 October 2022
The prevalence of neural tube defects (NTD) in sub-Saharan Africa is high in comparison with other regions. Recent systematic reviews estimated the pooled prevalence of NTD in Africa at approximately 21 - 50 per 10,000 births with the highest rates in East Africa. Associations with folate supplementation and maternal environmental exposures have been noted. This webinar aims to bring together collaborators from across the region to discuss the epidemiology, prevention and management of NTD as well as addressing issues of access to care and patient support.

Teratogens and Pharmacovigilance

24 November 2021
This webinar focuses on teratogens and pharmacovigilance as part of the prevention of congenital anomalies. Representatives from the World Health Organization presented the Pharmacovigilance Pregnancy Exposure Registry, their initiative on how to improve monitoring drug safety among pregnant women on antiretrovirals, and the future initiatives for pharmacovigilance in pregnant women. Lessons learned in Botswana from the initial dolutegravir- neural tube defect findings, and communication of unexpected news. Efforts towards an African platform for congenital anomalies in Burkina Faso initially focusing on Zika and maternal infections were presented.

Specialist service provision – Pediatric surgery

27 October 2021
This webinar focused on early detection and referral of children born with correctable life-threatening congenital anomalies, the current state and needs of pediatric surgery in sub-Saharan Africa, and efforts that can be made towards saving the lives of children born with congenital anomalies in resource poor settings.

Chair: Dr Emma Kalk, Centre for Infectious Disease Epidemiology & Research, University of Cape Town

Use of new technologies for congenital anomaly surveillance, diagnosis and care

29 September 2021
The advent of mobile health and of telemedicine has presented new opportunities to facilitate surveillance, diagnosis and care of congenital anomalies in low resource areas. This webinar will focus on some of the tools available, and provide an opportunity for discussion of further needs.

Chair: Dr Ayede Adejumoke Idowu, Pediatrician researcher, Department of Paediatrics, College of Medicine University of Ibadan, Nigeria

Birth Defect Surveillance – Why and How, the African Experiences Part 2

25 August 2021
The Sub-Saharan Congenital Anomalies Network aims to improve the diagnosis and care of children with structural congenital anomalies and promote the identification of their causes for prevention by building an evidence base through surveillance, collaborative research and improving capacity.

There are few established birth defect surveillance systems in Africa, however there have been recent effort to build capacity building and establish surveillance in Africa. This 2-part webinar series focuses on the importance of surveillance and show case the experience to date of existing and emerging surveillance programs in Africa.

Addressing congenital anomalies and triple surveillance on the path to meet SDG3 targets

28 July 2021
The Sustainable Development Goal 3 (SDG-3) aspires to ensure health and well-being for all with all countries aiming to reduce neonatal mortality end and end preventable deaths of newborns and children under 5 years of age by 2030. Congenital anomalies cause death and disability, as well as affect families and communities throughout the lifespan. Meeting this challenge effectively requires addressing both its roots and the branches -- the causes as well as the outcomes of congenital anomalies. Triple surveillance and triple action provide a framework to concurrently understand and address risk factors, occurrence, and health outcomes.

sSCAN: Birth Defect Surveillance – Why and How, the African Experiences Part 1

30 June 2021
There are few established birth defect surveillance systems in Africa. However, recent capacity building efforts have been made by the World Health Organization, International Center for Birth Defect Surveillance and Research, and the US Centers for Disease Control and Prevention. This two-part webinar series will focus on the importance of surveillance and show case the experience to date of existing and emerging surveillance programs in Africa.

Chair of Session: Linda Barlow-Mosha, Senior Investigator Makerere-University Johns Hopkins University Research Collaboration, Kampala Uganda, PI of Seed Project to Establish an African Network for Congenital Anomalies (funded by Medical Research Council- UKRI), Co-PI of Birth Defect Surveillance Program in Kampala Uganda