Hidden toll of dying and disabled children; A comprehensive global analysis identifies trends and interventions
Every year an estimated 8 million children -- about 6 percent of total births worldwide -- are born with a serious birth defect of genetic or partially genetic origin, according to a new report from the March of Dimes.
Additionally, hundreds of thousands more are born with serious birth defects of post-conception origin due to maternal exposure to environmental agents, such as alcohol, rubella, and syphilis, says the March of Dimes Global Report on Birth Defects: The Hidden Toll of Dying and Disabled Children.
Some middle-income countries have infant mortality rates that approximate 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. For these countries, the next steps recommended include:
Improvement Is Possible, March of Dimes Says
Although poorer nations may lack resources for these recommended programs and their health services are already severely stretched, the March of Dimes report says major improvements can be made within existing health care systems, for example by training health care providers to use simple diagnostic and preventive tools that are available.
In the past, the toll of birth defects in these countries has been underestimated for a variety of reasons, the report authors say. These include poor, if any, health statistics; lack of birth defects surveillance or registries; reliance on hospital-based, rather than population-based, studies; and limited diagnostic capability. Even with the sophisticated facilities available in wealthier nations, only about 50 percent of birth defects can be diagnosed accurately, the report authors say.
Just one of those causes, fetal alcohol syndrome (mental and physical defects caused by drinking alcohol during pregnancy), is a "huge problem but there are countries that dont recognize or monitor it," Prof. Christianson says. "Around the world, fetal alcohol syndrome is one of the more common fetal environmental problems."
Professor Modell has worked for many years to develop the database, using all information available and extrapolating, based on known experience in other countries, to fill in gaps. "This is a first cut," she says. "With more study and more money, we will be able to answer many of the questions that this report has uncovered."
Data provided for the first time in this report are considered an essential addition to the extensive worldwide effort to reduce infant and child mortality to meet one of the United Nations Millennium Development Goals for 2015. By the beginning of 2004, efforts to meet this goal fell far below U.N. projections. Data in the March of Dimes report make a strong argument for recognizing and addressing the significant contribution of birth defects to infant and childhood mortality if the U.N. goal is to be achieved.
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