National Preventive Mechanism In January 2012, Public Defender of Georgia, on his initiative, started to study the state of the rights of the children with hydrocephaly in the Tbilisi Infant House148. He also addressed the Social Service Agency with a recommendation to conduct an inquiry into the case149. The reply letter of the Agency150 gives the following dynamics of the children with hydrocephaly: in the period of January-June 2012, 15 children diagnosed with hydrocephaly lived in the infant house; as of June 2012, five of them had died. During the monitoring, the experts monitored six children diagnosed with hydrocephaly on-site. In the cases of all the six children, the clinical manifestations of hydrocephaly were quite complicated (particularly large amounts of cerebrospinal fluid in the brain ventricles and subarachnoid space, significant increase in head sizes, etc.) and the intracranial pressure had increased. The clinical evidence was manifested in the following: each child had a very strained, pulsating anterior fontanel, ophthalmoplegia, with classic manifestation of sunset syndrome, with considerably increased strain in the muscles of both the torso and the limbs, with typical manifestations of suppression of the nervous system – the children were in a lethargic state (in a weakened, powerless state), with visual and auditory disorders, with symptoms of gastroesophagal reflux151. According to the assessment of the monitoring group, the aforementioned state of the children was caused by inadequate medical service. The aforementioned was, first of all, connected with ineffective performance of essential and necessary neurosurgical intervention or with a neurosurgeon’s decision not to perform a surgical intervention on purpose. The lack of essential neurosurgical intervention also implied restriction of palliative intervention whose major function was to decrease the clinical symptoms caused by the disease and to place a ventricular shunt. According to the staff, the failure to perform the aforementioned intervention was caused by neurosurgeons’ decisions. The medical professionals of the infant house noted that the neurosurgeons based their decision on one factor only: how “prospective” the child was, to what extent the child would have a chance of developing and having a positive dynamics if a shunt was placed. The failure to perform the aforementioned intervention turns these children’s lives into a waiting for death, regardless of how many days, months, or years they have left to live. The period of waiting is made even more grave by pain and discomfort caused by an increase in intracranial pressure; and medical specialists fail to perform intervention (including neurosurgical) to alleviate this discomfort of beneficiaries of the infant house, because, according to the common opinion, “these children don’t feel the pain” even when their skull and face become entirely deformed and slowly lose their original form due to accumulation of fluid. Dozens of medical specialists watch this condition of children passively, not even considering it necessary at least to alleviate their pain and enormous discomfort in the framework of palliative care. In the opinion of the foreign members of the monitoring group, the aforementioned practice contradicts entirely with international clinical practice in this direction. According to them, the absolute majority of children with hydrocephaly or with the risk of developing hydrocephaly receive shunting within several days or months of birth, which, in most cases, gives the children a positive chance to develop and grow up. Even in those few cases when a child is expected to die due to a complicated medical diagnoses, the child receives shunting in the framework of palliative care to decrease the pain and discomfort connected with accumulation of fluid during the progress of the disease, so that the quality of the child’s life until his/her death (however short this time may be) is normal and the last period of his/her life does not turn into a source of suffering. The National Preventive Mechanism assessed the practice in the Tbilisi Infant House as a serious act of ill-treatment which may even be equivalent to torture and inhuman treatment in its severity. CONTINUITY OF MEDICAL SERVICE FOR INFANTS Article 3 of the Law of Georgia on Health Care indicates that continuity of medical service implies uninterrupted exercise of preventive, diagnostic, treatment, rehabilitative, and palliative measures. 148 149 150 151 Case No. 1587-11 Letter No. 83/08-1, January 9, 2012 Letter No. 04/3112, January 23, 2012 A condition when food or fluid gets pushed back from the stomach www.ombudsman.ge NPM Report