Not a day goes by when Wen Bing isn't wracked with guilt over his failure to have a premarital medical check, an omission that led to the death of his 9-year-old son.

Speaking of his son, who died nine years ago, the 35-year-old said: "He had soft hair and tender eyes. He was a mild boy. His death left a wound in my heart that will never heal."

Wen's son was 4 months old when he was diagnosed with thalassemia - a hereditary blood disorder that causes severe anemia - at a hospital in Guangzhou, Guangdong province. Wen and his wife cried when the doctors told them their son's condition could have been predicted if they had chosen to have premarital checks.

"Both my wife and I are carriers (of thalassemia), and while we don't have the disease, our children have a 25 percent chance of being born with it, a 25 percent chance of being healthy, and 50 percent of being carriers. My boy was in the unlucky 25 percent. Our ignorance brought disaster to our family and killed our boy."

Hua Hua, director of the Premarital Health Department at the Nanjing Maternity and Child Health Care Hospital, said: "Premarital tests can detect five major diseases, including Hepatitis B, AIDS and syphilis. The diseases can be passed onto babies and can severely affect their health."

It wasn't until his son was hospitalized that Wen became aware that in the early years of this century, about 13 percent of people in Guangdong carried the disease, which can be easily detected through blood tests.

According to the China Health Statistics Yearbook for 2010, the proportion of the Chinese population having premarital checks fell dramatically, from 53.4 percent in 2003 to 2.7 percent in 2010.

The 2003 Report on Maternal and Child Health Development showed that 120 in every 10,000 babies were born with defects that year, and the number rose to 149.9 in every 10,000 babies by 2010.

In September, Wang Guoqiang, deputy director of the National Health and Family Planning Commission, said that about 900,000 babies are born with congenital diseases in China every year.

In the 1990s, the Law on Maternity and Child Healthcare made it compulsory for couples planning to marry to undergo premarital health checks, and the marriage law barred people with hereditary diseases from tying the knot.

In 2001, an amendment to the Law on Maternity and Child Healthcare stipulated that civil affairs departments should check the results of premarital checkup before issuing marriage licenses.

However, compulsory testing was abolished in 2003, after complaints that it violated people's rights, and couples were left to decide if they wanted the checks or not.

Proposed amendment

Recently, Jiangsu province in East China announced plans to reintroduce the checks to stem the rapid increase in the number of children born with defects since 2003. A proposed amendment to the local laws on maternity and children's health, which has been submitted to the provincial congress for deliberation, will make it compulsory for couples planning to marry to have premarital checks at authorized medical establishments.

According to the China Health Statistics Yearbook, the proportion of people having the tests in Nanjing, Jiangsu, fell from 98 percent in 2003 to 1 percent in 2010, while in Shanghai the number declined from 98 percent in 2003 to 3.17 percent in 2004. At the same time, Guangzhou witnessed a fall from 97 percent to 4.43 percent.

Wang Yonghong, director of Jiangsu's Health and Family Planning Commission, said premarital medical checks are the most effective way of reducing the number of babies with birth defects.

"The government should take responsibility and release urgent measures to publicize the checks and encourage couples to have them," he said.

In 2005, Zhou Hongyu, a representative of the National People's Congress, China's top legislative body, suggested that free premarital checkups should be provided by the public health service, and that some tests should be compulsory. In the same year, the northeastern province of Heilongjiang reinstated compulsory premarital checks, but was forced to abandon the policy after a protracted controversy.

Hua, from the Nanjing Maternity and Child Health Care Hospital, said the number of people opting to have the checks rose after free tests were provided in the city, and about 10 percent of the local population has taken up the offer.

cangwei@chinadaily.com.cn

(China Daily USA 11/11/2014 page5)