Focus on high rate of birth defects in south

Shokhista Rakhimova, a resident of the southern Uzbek city of Karshi, gave birth to a second baby in November 2003. She had been expecting a daughter and luckily delivered a girl. But her happiness was short lived when the baby died the same day. Upon examining the little infant's body, doctors concluded that the reason for her death was hydrocephalus, or in simpler words, the girl had been born with a congenital abnormality. "Abnormal child-births are on the rise as we have been observing an increase in congenital abnormalities recently. In one year [alone] we have had 32 such cases in our institute," Kizlarbas Achildieva, the chief doctor of the Karshi branch of the National Obstetrics and Gynaecology Institute (NOGI), told IRIN in Karshi, adding that there had been newborns with congenital abnormalities in other maternity hospitals of the region as well. "It was rare in 1991. Year by year more and more babies are born with abnormalities," she claimed. According to the local branch of NOGI, 3,747 babies were born in that institution in 2003, of which 32 - or roughly one percent - were born with various congenital abnormalities, Abdunazar Sattorov, deputy head of the unit, explained. Echoing that view, Salima Achilova, the chief doctor of Karshi maternal hospital, conceded that there was a problem, noting that 20 babies were born with abnormalities in their hospital over the past year. Of the abnormalities cited, most of the children were born with anencephaly [a defect in brain development resulting in small or missing brain hemispheres], cerebrospinal hernia, hydrocephalus or water on the brain, labial cleft, palate cleft and hyper-elastic skin [skin that can be readily stretched beyond its normal limits and return to its normal state]. As for the root causes of the phenomenon in the south of Uzbekistan, health officials cite various issues. "Mainly what we observe is that women lack folic acid," Sabokhat Meilieva, a neo-natal specialist at the Karshi branch of NOGI, told IRIN. "Malnutrition is the main factor of congenital abnormality. Nowadays, many people do not have enough resources to feed themselves [properly]. There are families which have had no meat products for several months," she explained. However, some health officials believe that the primary cause of the problem is marriages between close relatives. "The main reason [of the problem] is marriages between relatives," Achilova said. Concurring, her colleague Sayora Alikulova said: "Fifty percent of such births are babies born to such families."

A child suffering from hyper-elastic skin

Alikulova gave an example of a case from the Toshli village of the "Chorvador" kolkhoz, a former collective farm in Chirakchin district, where many families had been started only among relatives. "Many abnormalities are observed in this village," she said. Dilafruz Bekmuradova, a resident of the village, gave birth to two such babies over the past three years. "She delivered a girl on 6 November 2003, but the baby did not survive. She was born with hyper-elastic skin," Alikulova said, adding that a similar fate befell Dilafruz in 2001 as well. "In 1996, I married my paternal aunt's son and had three children - a son and two daughters," Dilafruz told IRIN. "Later on, I delivered the fourth and fifth children, both born with defects". She confirmed that there had been many such families in the village and often babies had been born with defects. "We are not masters of our lives; decisions are made by our parents. We marry those with whom we are told to marry," Dilafruz said. However, some say that girls themselves are not against such marriages. In addition to believing there was less chance of marital problems, some contend that a relative wouldn't leave his wife who is from his extended family. Moreover, village authorities admit that the practice of marriages among relatives is a normal tradition among the local community. "The people here are ethnic Arabs. There are cases when their sons marry girls from other districts, but there is no way that they can give their daughters in marriage to men from other districts," Eshim Eshankulov, the chairman of the village civic council, said. Meanwhile, Salim Kilishev, a doctor at the local medical facility, told IRIN that for four years a campaign had been in place to mitigate the practice, and had had a positive impact. "Women rarely apply to gynecologists. They do not visit the screening centre at all," he said. That being the case, two screening centres were established in Kashkadarya province, namely in Karshi city and Shakhrisabz town, where services are provided free of charge. "We identify such kind of abnormalities during the second or third month of pregnancy and warn women if the babies might be born with defects," Ziyoda Obyakulova, the chief doctor of the screening centre, told IRIN.

A child suffering from a cleft palet

According to the screening centre, supported by western donors, with the German KFB Bank being the largest, some 36 cases of pregnancies with abnormalities had been registered in Kashkadarya province in 2003. "Though many pregnant women terminate unfortunate pregnancies after we examine them, there are those who go as far as to delivering a baby as mothers-in-laws or husbands do not allow them to have an abortion," Obyakulova explained, adding that in several cases women became invalids because of such problematic births. One of the priorities in addressing the issue is conducting training among the women to make them aware of the risks incurred by marrying relatives. "This is done for their own sake. We intend to decrease infant mortality and congenital abnormality," Mavjuda Gafurova, a doctor at the screening centre, told IRIN. But the challenge for such an impact remains a large one. "To deal with the issue, comprehensive foreign donor assistance is needed," the chief doctor of the clinic, Kizlarbas Achildieva, said. "We have to conduct educational campaigns. Also we have to protect women from unwanted pregnancies. The issue is vital, and its solution does not depend only upon doctors, but also upon women themselves, husbands and close relatives."