Report on the State of Human Rights in Institutions for Persons with Disabilities an early stage, the child develops a severe condition of hydrocephaly with inborn injuries and inevitable death follows at an early age. The same is the case in several countries of the Eastern Europe and, obviously, in many other countries of the world. Poverty and violation of the rights of persons with disabilities often combine to pass a death sentence. In these countries, the healthcare system does not ensure the placement of a ventriculoperitonealshunt for these children, while poor parents cannot pay for this procedure; often, parents are not even told that such a procedure exists and they can save the life of a child with such a diagnosis. In developing countries, the statistical figures of children diagnosed with hydrocephaly range from 0.2 to 0.8 per 1,000 newborns. The causes of congenital hydrocephaly are divided into primary (idiopathic) and secondary (acquired) causes, of which idiopathic causes are considerably dominant. Natural development of the disease without a surgical intervention causes progressive cognitive deterioration and an early death – as a rule, before the person reaches the third decade143144145. However, the perfection of neurosurgical and diagnostic methods has enabled these people to live much longer and improved lives. There are about 750,000 people diagnosed with hydrocephaly in the world, and, each year, 160,000 ventriculoperitonealshunts are implanted in them. Before the 1940s, when the method of ventriculoperitonealshunting was introduced, only 20% of children diagnosed with hydrocephaly reached adulthood (without the surgery), while 50% of those who survived developed permanent brain damage. These statistical figures improved significantly after the introduction of the shunt systems by Nulsen and Spitz in 1952 and by Holter and Pudenz in 1960. As of today, the majority of children diagnosed with hydrocephaly reach adulthood. The 20-year-long scientific research has shown that more than half of the children who received shunting in the 1970s have graduated from high school146. In 2005, researchers of the Department of Neurosurgery, Neurology and Pediatrics of the University of California published a study147 according to which the mortality rate of children diagnosed with hydrocephaly decreased by 60% from 1979 to 1998 in the United States. The decrease was distributed almost proportionally across all the three groups of people with hydrocephaly: the mortality rate of people with congenital hydrocephaly decreased from 8.9% to 3.1% (in 100,000 cases); the mortality rate of people diagnosed with hydrocephaly together with spina bifida decreased from 4.9% to 0.6% (in 100,000 cases); and in the case of persons with acquired hydrocephaly, the death rate decreased from 2.3% to 0.5% (in 100,000 cases). The study was conducted on the entire population of the US; the data were taken from the National Center for Health Statistics. The National Preventive Mechanism has paid particular attention to the rights of children diagnosed with hydrocephaly. The experts found quite a large group of children with hydrocephaly in the Tbilisi Infant House, though practically no children with this diagnosis were housed in other children’s homes (with one exception) or in the institutions where beneficiaries of infant houses are transferred after they reach the age of six (the institutions for children with disabilities in Senaki and Kojori). According to the data of the Social Service Agency, children with this diagnosis are seldom taken into foster care or adopted. This gives rise to well-founded doubts about the fate of these children, since, as the aforementioned international practice indicates, the lifespan of these children is not limited to six years. 143 144 145 146 147 51 Laurence KM (1958). The Natural History of Hydrocephalus. Lancet 2: 1152-1154; Laurence KM (1960). The Natural History of Hydrocephalus. Postgraduate Med.J 36:662-667 Laurence KM (1960). The Natural History of Hydrocephalus. Postgraduate Med.J 36:662-667 http://emedicine.medscape.com/article/937979-overview John H. Chi, M.D., M.P.H., Heather J. Fullerton, M.D., M.A.S., and Nalin Gupta, M.D., Ph.D. (2005), Time Trends and Demographics of Deaths from Congenital Hydrocephalus in Children in the United States: National Center for Health Statistics data, 1979 to 1998, Journal of Neurosurgery (Pediatrics 2); 103:113-118. ANNUAL REPORT OF THE PUBLIC DEFENDER OF GEORGIA NPM Report 2012 SITUATION IN GEORGIA