Birth defects pose a challenge

Children with birth defects, those abandoned by their parents and orphans deserve greater attention and help to overcome the great odds they face. Hopefully, the country will see a positive change in the lives of such children. Wang Yiqing writes on the three challenges.

Reducing the number of children born with birth defects has become a big challenge for China. A majority of children adopted by social welfare institutions are physically challenged. For instance, Tianjin Institute of Children's Welfare adopts about 160 orphans every year, and the rate of physically challenged and disease-prone children is as high as 98 percent.

Every year about 900,000 children are born with congenital anomaly in China, which means a child with such a defect is born almost every 30 seconds. Nationwide, about 30 million families, or about 10 percent of the country's total, have given birth to children with birth defects, and the rate of birth of such children has been rising in recent years. According to a Health Ministry report, it was 5.6 percent in 2012.

Many families, especially those in underdeveloped regions, have fallen into poverty because they had to use huge amounts (even their life's savings) for the treatment of children with birth defects and inherited ailments. For instance, a bone marrow transplant for a Mediterranean anemia patient costs at least 300,000 yuan ($48,000), which very few families in China can afford.

Also, birth defects are estimated to cause direct economic loss of 1 billion yuan to society every year and the total cost of medical treatment and welfare for children born with birth defects could be as high as 30 billion yuan.

The key to reducing the number of children born with congenital anomaly is precaution. In 1986, China established a birth-defect monitoring system, and since then it has implemented preconception care, prenatal examination and neonatal disease screening programs, as recommend by the World Health Organization. But still precaution has been lacking.

Many have blamed the rising number of birth defects on the annulment of the compulsory pre-marital medical check-ups. In 2003, the government turned the mandatory pre-marital medical check-up into a voluntary test. The rate of pre-marital check-ups dropped from about 80 percent in 2003 to 41 percent in 2011, even though many local governments provide pre-marital check-ups for free.

There is no study to prove that the increasing rate of birth defects is negatively related to the falling rate of pre-marital check-ups. But there is no doubt that the drop in pre-marital check-up rate means that people take less precaution against birth defects, says Ren Aiguo, head of Peking University Institute of Reproductive and Child Health. Voluntary pre-marital check-up is, in fact, a progressive step toward respecting people's rights. But many people don't realize its importance.

Moreover, some effective medical interventions haven't been publicized nationwide because of the unbalanced economic development, education and healthcare level, and local cultural barriers. People in central and western regions lag far behind their compatriots in the eastern region in taking precautionary measures against defective births. For example, the screening rate for genetic metabolic diseases in eastern areas is twice that in western areas.

Both the authorities and couples hoping to have a child should fulfill their responsibilities in reducing birth defects. The authorities should publicize the importance of taking precautions against birth defects and increase spending on medical intervention measures and services to reduce the rate of birth defects. Couples, on their part, should enhance their medical knowledge and accord due importance to preconception and prenatal care for the sake of their children.

But since total prevention of birth defects is not possible, the government should establish a sound social and medical security system to help children with birth defects and their parents. The government also should include all serious birth defects and hereditary ailments, even the rare ones, in the nationwide insurance scheme for serious illnesses to ease people's burden.

Many parents have abandoned children with birth defects because they can't afford their medical treatment.

Therefore, an improved social and medical security system is needed to not only prevent such tragedies, but also help sick children and their families live a better life.

(China Daily 03/14/2013 page10)