According to an annual report by the BINOCAR (British Isles Network of Congenital Anomaly Registers), birth defects are not being reported as often as they should be. Currently, about one in 80 births are noted as having a birth defect of some kind. Researchers believe the real number is actually closer to one in 50 births. The study used existing information collected between 2005 and 2009.
Despite the fact that many birth defects are reported, researchers are concerned that some areas may not provide the coverage or reporting needed to give an accurate estimation of the true number of birth defects each year. According to Joan Morris, a professor at Queen Mary (University of London), “This is a major issue. It is essential we know how many babies are being born with anomalies and how good their survival is across the whole country, so we can identify ways to reduce the occurrence of anomalies and plan for the care of these babies.”
Information for the study was pulled from five data sources and two disease registers. There are three additional sources of birth data that were not tapped for this study. Researchers hope the three additional resources will provide more definitive information on the true rate of birth defects. London, Southeast Anglia, Northwest Anglia and East Anglia currently have no collection of birth data with verifiable reports of birth defects.
Researchers are concerned with the underreporting and believe there is a strong need for the creation of additional registers and data collection resources where birth defects and other birth anomalies can be reported. Registers were created in the 1960s after a large thalidomide epidemic. At first, the collection resources only received information from midwives, doctors and medical staff. In the 1980s, registers started collecting information from hospitals, including lab reports and past health records.
According to the new numbers, researchers believe the report of 1.3% rate of birth defects is actually closer to 2% - a huge increase when the population of the coverage area is taken into consideration.
In 2009 alone, researchers believe more than 14,000 infants were born in Wales and England with birth defects. Of all the reported birth defects, congenital heart disease was the most common.
Source: Queen Mary, University of London. 15 December, 2011.