The global toll of birth defects
Until recently, the prevention of birth defects and care of affected children have been accorded relatively low priority in developing countries by international donors, health agencies and national governments. The reasons that birth defects have been a vastly unappreciated and under-funded global public health problem were due, in part, to the lack of data on their global toll. To address this critical data gap, the March of Dimes, in January 2006, issued the March of Dimes Global Report on Birth Defects: The Hidden Toll of Dying and Disabled Children. The report is significant because it was the first to identify the severe, and previously hidden, toll of birth defects around the world. It includes the most extensive global database on serious birth defects of genetic or partly genetic origin ever developed, detailing the birth prevalence rates and the numbers of affected births in 193 countries. The findings of this report described a harsh reality.
Every year 7.8 million children are born with a serious birth defect of genetic or partly genetic origin. Hundreds of thousands more are born with serious birth defects due to teratogens, including fetal alcohol syndrome, maternal iodine deficiency syndrome, congenital syphilis and congenital rubella syndrome. More than 3.3 million children die from birth defects each year, with a particularly severe impact in developing countries where more than 90 percent of births and 95 percent of deaths of children with serious birth defects occur.
Birth defects, however, do not only kill. When disability is considered, the global toll of birth defects reflects an even harsher reality. Many infants burdened with serious birth defects die early in life, particularly in lower-income countries, and those who survive almost always have the potential to be disabled, either as a direct or indirect result of their condition. Improvements in patient care have contributed significantly to decreased levels of disability in individuals born in wealthy nations. However, only limited application of this knowledge and technology has occurred in lower-income countries, which currently do not have broad access to comprehensive services for care and prevention, and where 85 percent of the world's 6 billion people live.
There is promise, however. The March of Dimes report concluded that up to 70 percent of birth defects could be prevented, ameliorated or treated globally by strengthening primary care services built on a continuum of preconception care, antenatal care, management of labor, and newborn and child health care for infants and children with acute and chronic disorders.
First steps for low-income countries with high rates of infant mortality should include educating the community, health professionals and workers, policy makers, the media and other stakeholders about the toll taken by birth defects and opportunities for effective prevention, treatment and care. This includes ensuring a healthy, balanced diet and controlling infections and chronic conditions during a woman's reproductive years; training physicians, nurses, allied health professionals and workers in the recognition and care of children with common treatable birth defects; and expanding capacity for birth defects surveillance and monitoring.
Middle-income countries with infant mortality rates approximating those of the United States in the early 1960s, when it began its systematic effort to strengthen medical genetics services for the care of affected children and prevention of birth defects, could take next steps, including training health care professionals in medical genetics; identifying couples at higher risk of having children with genetic disorders; establishing newborn screening programs to identify babies born with treatable metabolic disorders; and educating women and men of childbearing age about how they can work with health professionals to maximize the chances of having a healthy pregnancy and baby.
See also: Controlling Birth Defects (PDF, 829kb)
Most common questions
How does March of Dimes Global Programs carry out its activities?
March of Dimes Global Programs conducts its work through "mission alliances" with non-governmental partners in target countries that share the March of Dimes mission to prevent birth defects, preterm birth and infant mortality. We focus on collaborative projects that are product-intensive, of short turn-around and measurable. In doing so, we respect the individual cultural differences of our partner organizations. We offer our partners technical expertise and the extensive resources of the March of Dimes, including professional and public health education materials and tools for establishing data collection systems, which have been shown to be easily adapted to local conditions and needs. In doing so, we have become a highly-visible, trusted and respected ally in the eyes of our developing country colleagues. For more information on individual projects and on our Global Network for Maternal and Infant Health, please see the article "Inside March of Dimes Global Programs".
How severe is the global problem of birth defects and preterm birth?
Every year, 23 million babies worldwide are born prematurely or with a serious birth defect. More than 4.4 million of these die before their 5th birthday and, for those who survive, the majority will be disabled for life. While birth defects and preterm birth affect all countries, the highest numbers are in developing countries where more than 94% of affected births and 95% of the deaths of these children occur. Yet, until recently, premature birth and birth defects were not recognized as public health priorities by international health agencies, national governments or donor organizations. March of Dimes Global Programs is working hard to bring attention to this gap in policy and programs and, with it, our dream that one day all babies everywhere will be born healthy. For more information on the global toll of preterm birth and birth defects and on the steps that need to be taken to reduce this toll, see The March of Dimes Global Report on Birth Defects and The Global and Regional Toll of Preterm Birth.
Where does March of Dimes Global Programs work?
Since its establishment in 1998, March of Dimes Global Programs has conducted partnership projects in 33 countries across Central and South America, Africa, the Middle East, South-eastern Europe, Asia and the Western Pacific region. For more information on current projects, please see the article "Inside March of Dimes Global Programs".