Improvement in Birth Defects Notification
A study by masters student Ms Vuyiswa Mtyongwe titled: “National Birth Defects Data: 2006-2012”, was presented at UKZN’s College of Health Sciences Research Symposium.
The presentation was made by Dr Colleen Aldous of the School of Clinical Medicine on behalf of Mtyongwe who is currently on maternity leave. The study was part of a broader programme looking at the burden of birth defects in South Africa and how this could be addressed.
Aldous, who supervised Mtyongwe, said this was the first study in a series aimed at improving birth defects notification throughout the country. ‘We reflect on the successes and challenges posed by the Birth Defects Notification system which was put in place in 2006.
‘The study looks at an existing Birth Defects notification that was recommended from the 2001 Policy Guidelines for the Management and Prevention of Genetic Disorders, Birth Defects and Disabilities.
‘The broader programme outlined in these guidelines includes how big the problem is, what are the major disorders to be addressed, how to address them through the public health system from primary to tertiary care, the educational needs to ensure this could happen and the laboratory service to support such a clinical service,’ said Aldous
‘Since the Guidelines were published, a change in priorities to child health occurred as a result of TB and HIV. As a consequence most of the recommendations of the Guidelines were not put in place.’
The study assesses how well the tool has functioned, accepting that it had functioned without the requisite teaching and training of nursing staff to undertake diagnosis in rural areas. Aldous says results show that only 12% of congenital disorders diagnosable in the first week of life are notified.
‘Accurate birth defects figures are needed to plan services into the future, especially because of the drop in the Infant Mortality Rate to below 40/1 000. Services for care and prevention of birth defects are becoming a priority again.
‘This has been documented in another paper in our group which will come out soon. Obviously, health care planners cannot rely on our current data as it is not a true reflection of the situation on the ground,’ said Aldous.
Because of the priority shifting away from birth defects in the late 1990s, clinical services throughout the country had stagnated; staff had not been allocated, lab services had been neglected and dismantled, and the training of doctors and nurses at primary health care level had not met the need to deal with these problems.
‘The Maternal National Strategic Plan of 2012-16 has nothing in place for children with disabilities. Most children with a birth defect are disabled. When the government realises the care of these children becomes a priority now that infant morbidity and mortality have reduced due to PTMTC, they have to address the problem,’ said Aldous.
She said although it was not the first birth defects notification system, it was the first time they would try to improve the old system which had not been as successful as they hoped.
Aldous said on returning from maternity leave, Mtyongwe would design and implement a new approach to Birth Defects Notification.
Mtyongwe, who gave birth to her first child on the day of the presentation, works in the Sub-Directorate for Human genetics at the National Department of Health and is responsible for the National Birth Defects Database.