New toolkit aims to improve global birth defects surveillance

Birth defects or congenital anomalies are an invisible tragedy around the world. Every year an estimated 295 000 newborns die due to congenital anomalies during the first 28 days of life. The most common, severe congenital anomalies are heart defects, neural tube defects and Down’s syndrome.

Congenital anomalies can cause miscarriage, stillbirth, and for those who survive, lifelong physical and psychological difficulties. The lack of medical, surgical and support services to care for children affected, especially in low-resource settings, can take a toll on families and children.

In an effort to build up better prevention and care services to decrease the number of congenital anomalies worldwide and to better care for those who are born with birth defects, WHO, the Centers for Disease Control and Prevention, the International Clearinghouse for Birth Defects Surveillance and Research, and the March of Dimes today launched a new toolkit – Birth defects surveillance: a manual for programme managers and Birth defects surveillance: quick reference handbook of selected congenital anomalies.

“Many birth defects go unreported worldwide, and surveillance systems, particularly in low- and middle-income countries, are weak or do not exist,” says Dr Anshu Banerjee, Director, WHO Department of Maternal, Newborn, Child, and Adolescent Health and Ageing. “By investing in birth defects surveillance to collect better quality data, countries can adequately provide the high-quality services for prevention, care and support these children and families need.”

With the growing recognition of the impact of birth defects due to infectious diseases like Zika virus, nutrition deficiencies and other conditions in pregnancy, the updated manual is intended to serve as a tool for the development, implementation and ongoing improvement of national congenital anomalies surveillance programmes. The manual is also accompanied by a newly created quick reference handbook for front-line health care professionals who are diagnosing and collecting data on congenital infections and birth defects. It includes illustrations and photos of different birth defects, as well as summaries of the guidance for diagnosis and data collection. 

Through the development of a population-based surveillance programmes that accurately capture congenital anomalies, countries can better understand the burden of these conditions, become more aware of the risks involved, refer identified infants to services in a timely manner, and use prevalence estimates to evaluate and strengthen any current prevention or clinical management programmes.

Countries can also use the information gathered to inform stakeholders and policy-makers about the importance of investing in programmes aimed at reducing the occurrence of congenital anomalies, and to help them plan for appropriate services.

Congenital anomalies are largely preventable through improved nutrition in women of reproductive age, prenatal counselling and folic acid supplementation, adequate antenatal care, including vaccination, and screening, prevention and treatment for infectious diseases during pregnancy, like syphilis and rubella.

In 2010, Member States adopted a resolution to promote primary prevention and improve the health of children with congenital anomalies through developing and strengthening registration and surveillance systems, developing expertise and building capacity, and strengthening research and studies on etiology, diagnosis and prevention.

“Today, WHO is committed as ever to increasing awareness, reducing stigma and expanding access to services for prevention and care of birth defects as part of every country’s journey towards universal health coverage,” says Zsuzsanna Jakab, WHO Deputy Director-General.