Children with spina bifida in Moldova are dying needlessly and in great pain because they are not receiving the treatment that should be theirs by right, Human Rights Adviser of the United Nations Office of High Commissioner for Human Rights (OHCHR) Claude Cahn said when presenting a study centering on the rights of children with such a disease in Moldova, produced by the OHCHR, IPN reports.
Although an estimated 130 children are born with spina bifida annually in the Republic of Moldova, research was only able to identify 24 first-time shunt operations carried out in the Republic of Moldova in 2013.
Although treatment appears to have improved compared with practices of two decades ago, testimony from parents of children with spina bifida indicate that children who need shunt implant operations are not getting them in a timely fashion. Shunts are rudimentary drains which are surgically implanted to prevent the development of hydrocephalus in children with spina bifida.
Hydrocephalus is a condition in which the primary characteristic is excessive accumulation of fluid in the brain, frequently caused by spina bifida. In infancy, the most obvious indication of hydrocephalus is often a rapid increase in head circumference or an unusually large head size. Hydrocephalus poses risks to both cognitive and physical development. Effective treatment is critical to a positive outcome. Left untreated, progressive hydrocephalus may be fatal. The research found strong indications that dozens of children annually are not getting a shunt operation within the urgent time required.
“Corruption in the form of informal payments plays a part in this, as does the prejudiced view that ‘some lives are not worth living. It is also vital that policies to fortify food products with folic acid, a key prevention measure, are implemented in full and in the shortest possible timeframe. Women need to be getting enough folic acid before they become pregnant. The only demonstrated, effective mode of reaching all women is food fortification,” said Claude Cahn.
Study investigator Xenia Siminciuc said in the Republic of Moldova, many children are not managing to have access to shunt operations, reportedly due to the following factors: indifference or ignorance on the part of medical providers; corruption in the form of demands for informal payments; stigma against the children and families concerns, including engrained negative views that “some lives are not worth living”. As a result, children continue to face an extremely painful death that is avoidable.
The research documented stereotypes and negative attitudes, including among medical providers, including views to the effect that spina bifida occurs among “uncultured” families, and that treating spina bifida is a waste of the state’s resources. Despite evident barriers to effective care, some medical professionals interviewed blamed parents for issues facing children with spina bifida.
Important policies to begin fortifying food products with folic acid entered into force at the beginning of 2015 and should be fully in effect by the end of 2017. Fortified flour and bread are not readily accessible. Universal introduction of such polices in 2015 is likely to be a key moment in the prevention of spina bifida. Monitoring in this regard is particularly encouraged.
The cost of a treated case of spina bifida varies between 12,000 to 500,000 lei. A part of the money is allocated from the state budget, while the other part by the parents. However, not all of the operations are performed in the country owing to the absence of the necessary medical equipment.
