Romanian human rights defender advocates for children’s lives
Adriana Tontsch, a Romanian-born veterinarian living in Germany, learned from a friend in 2004 about the case of a Romanian child with a huge head full of fluid (hydrocephalus), caused by a treatable condition known as spina bifida. The infant had been neglected and placed into a “care” institution to die a slow and gruesome death. Surgery could no longer save the child from irreversible brain damage, but it could prevent death and increase the quality of the child’s life. Adriana became involved and raised money for the child to undergo surgery.
Today, Adriana is the president of the Romanian Association for Spina Bifida and Hydrocephalus (ARSBH). The Association has invested in training doctors and collected contributions from small donors to buy shunts which can prevent the accumulation of fluid in the child’s head. They have now saved over six hundred children with spina bifida who would have otherwise died. She says: “This is a human rights issue – an issue of access to health care.”
According to her, shunts are supposedly free in Romania, but in fact they are only available on paper. “Families have to pay for them out of their own pockets, and most are so poor that they cannot afford them,” emphasizes Adriana. “They are often told that their child has no future, which becomes a self-fulfilling prophecy. But if they had been properly treated, as they are in most European countries, they would have been able to live full lives with only a mild to moderate disability.”
She points out that Romania has excellent neurosurgeons, but they cannot perform the necessary surgery if they lack the shunts or if children are not referred to them due to stigma associated with the disability. And there is a lack of political interest in the issue because this disability only affects a relatively small group.
Adriana says: “Many children died who could easily have been saved. If hundreds of adults were being put to death in Europe for political reasons, there would be public outrage. Why doesn’t anyone care in this case?”
Moreover, even children who received a shunt are at risk of being denied treatment for common illnesses later in life. “Sometimes, they are being deliberately left to die - so that they will not burden society,” says Adriana. And for those languishing in institutions, their living conditions often remain horrendous. Therefore, ARSBH struggles to empower families to keep their children at home.
Still, since the Government does not have a consistent national register, there is no way for ARSBH to know how many children are actually suffering from spina bifida.
“The stigma of spina bifida remains strong. The Government must help us fight against discrimination, and raise awareness, as well as provide rehabilitation. People with disabilities such as spina bifida must have full access to their rights under the Convention on the Rights of Persons with Disabilities, including the right to non-segregated education and independent living. Ensuring survival is just the beginning,” she says.
17 December 2010