Population based surveillance of birth defects
With support from CDC Atlanta and WHO in collaboration with the state NHM, SWACH started population based surveillance in Ambala and Yamunanagar districts in which ASHAs were involved since July 2015.
ASHAs report the occurrence of birth defects on mobile phone irrespective of place of occurrence of birth. SWACH supervisors further discus with ASHA and family on phone to get a detailed description of the defect and procure evidence in the form of picture, investigation reports, outpatient card, discharge card, death certificate, etc. through what’s app.
These cases are then classified according to ICD 10. Each case reported is reviewed and verified by first verifier at SWACH along with the team. Cases found eligible (complete description along with evidence) are then uploaded in the WHO/NBBD portal. These cases are further verified by WHO experts.
Cases complete in all respects are accepted and cases that needs clarification or further evidence are sent back to SWACH with feedback which is complied, if possible. During the past 4 years, the rate of birth defects reported is 10/1000, in about 122,000 births.
This is comparable to the reporting of birth defects from large hospitals in India and in the countries of S E Asia region of W.H.O. The birth defects are 6 times more common in still births and amongst live born babies more than 30% babies die.
This is a substantial mortality burden. By the use of mobile technology and through ongoing interaction with the affected families it has been possible to correct birth defects partially or completely in 80% cases and nutritional status of babies with birth defects has shown improvement.
In Haryana, neural tube defects are pre dominant and these can be eliminated by fortification of wheat flour with folic acid. Research done in collaboration with W.H.O, CDC, PGIMER, Chandigarh and NHM, Haryana has led to an important policy decision taken by Haryana Government i.e. initiation of wheat flour fortification with folic acid, iron and vitamin B 12 and distribute fortified wheat flour through public distribution system.
This was rolled out as a pilot in two blocks in Ambala district which has now been extended to other parts of the state. This would not only help prevent neural tube defects, it would also help in control of public health problem of anemia. Although population based surveillance is resource intensive the reporting rate is more representative than hospital based surveillance