Breaking the Silence

Her name is Lora. She was born in 1990 in an orphanage in Bulgaria but soon after placed in a state institution for disabled children where she spent most of her childhood years. At the age of seven, she weighed seven kilograms.

"She was thin; she had no fat to protect her," recalled Elsabe Louw, a South-African who together with her husband Jack, are Lora’s adoptive parents. "If you touched her, you could see she was hurting."

Lora was diagnosed with cerebral palsy and severe "brain damage." The care of the staff for her well-being, however, was minimal and she was soon expected to die. She wasn’t the only one.

And she still isn’t.

As many as 238 children and youths have died since 2000 in social institutions in Bulgaria, according to a Sept. 20 report of the country’s public prosecutors and the Bulgarian Helsinki Committee (BHC), a human rights organization based in Sofia. This averages 25 deaths a year, at least 3/4 of which were avoidable, researchers found: These included 31 from systematic malnutrition; 13 from infections due to poor hygiene; 84 from physical weakening as a result of neglect. Another 15 deaths remain unexplained.

"The most striking of all cases is the one where a boy was found hung in the house of a staff member," Margarita Ilieva, legal director at BHC, told The Vienna Review. "We did not have enough information to conclude whether it was murder or suicide."

Currently, 1/6 of all children in state institutions are diagnosed with either a disability or a disease. This does not mean that only every sixth child suffers from an impairment, however, claims Elka Nalbantova, director of development at Bulgaria’s For Our Children foundation.

"The children who have not been diagnosed with anything are very likely to develop a disability," she said. "Life in these institutions slows down their development, and it might even make it harder for them to reintegrate into society at a later point. Every sixth kid might be diagnosed, but the truth is they all need help and support."

There are close to 1,000 mentally disabled children in 25 institutions throughout Bulgaria – a drop from over 1,900 in 2001, according to the State Agency for Child Protection. The decrease has nothing to do with a true change in morbidity.

"The deaths in these state homes are a constant," Nalbantova asserted. "The main reason is the gradual replacement of institutionalized care with a family environment."

This change is relatively recent.

In 2008, a BBC movie entitled Bulgaria’s Abandoned Children portrayed the life of children in a social institution for mentally disabled children in Mogilino, Northern Bulgaria, resulting in the closing of the home.

The grim scenes, uncovered by the production, pushed the public prosecutor’s office to start a round of investigations, which resulted in the uncovering of 75 child deaths over eight years.

Two years later, however, the reality is different – 238 deaths in 10 years, and 57 in only the last two.

There was a missing link.

"We have done regular monitoring over the years," explained Ilieva, "but often the directors of the homes would refuse to provide us with the information we required."

In the fall of 2009, the Bulgarian Public Prosecutor and the BHC started a seven-month, joint investigation concluding that the 75 deaths in 2000-2008 were far below the actual rate.

"The situation is very bad, to say the least," Ilieva emphasized. "The kids in these homes are severely neglected, systematically malnourished, not to mention being immobilized and regularly tied up to their beds."

To the Louw family this is nothing new.

"When they told us Lora was soon going to die, we could tell they were right," Louw remembered her first visit to the home. The girl was placed in the last room of the home, in the last possible crib. "She was just lying there on her back, motionless."

The next time they visited, however, turned out to be crucial.

"It was not until our second visit that I noticed that Lora was the only child to chase away the flies," she said, explaining that most other children had flies all over their face, even in their mouths.

At that point, Louw realized that the girl could not be so severely ill. When they finally got permission to take her to a hospital, it became clear that she had no brain damage at all, and that the paralysis was also misdiagnosed.

"This is a hostile environment for anyone to live in, especially for children," Ilieva explained. "The investigation has now become public and the prosecutors are checking on all deaths as well as inspecting cases of potential violence against the ones who are alive."

In all, the number of abandoned children in Bulgaria adds up to nearly 6,500, out of 993,000 children under 14, making it the country with the highest percentage in the EU. The reasons for mothers leaving their offspring to social institutions are many.

"Bulgaria is one of the poorest countries in Europe, which makes it very hard for many to fill their basic needs – food and shelter even, and they are in no way able or willing to share," Nalbantova explained.

Let alone raise a child.

"This is a common situation in former communist countries," said Father Georg Sporschill SJ in a recent interview, whose humanitarian organization Concordia takes care of abandoned children in Romania, Moldavia and Bulgaria. "In the West, it is an honor to do social work and help the ones in need, whereas Eastern Europeans tend to be ashamed of this part of society."

They lack well-established "sovereign thinking," he believes, a sense that they can handle the challenge they face both as individuals and as a society.

"Easterners are generally more hungry, and this is definitely a good thing, because it pushes them to achieve more," he continued. "However, people who have been poor in the past and are trying to get rich at the moment will most likely not be willing to share their wealth with others."

At the end of the day, however, money is not necessarily the biggest issue. Many mothers leave their offspring because of problematic relations in the family or as the result of unwanted pregnancy.

"Another major problem also arises when children are born with a disability," she added. "Many times, the mothers decide to abandon them right away or if they are not completely sure, they are often advised to do so."

They are counseled that the children will be safe in the hands of the state, which she claims "is a complete misconception." The first years of a child’s life are the most important ones in terms of their physical and mental development; however, Bulgarian state homes can barely provide subsistence.

Elsabe Louw could not agree more.

"Lora was nine years old when we decided to take her to a medical institution in South Africa, but she had the ability of a five-month-old," she said. "She weighed between 8-9 kilograms and was lying on her back the whole time. She couldn’t lie on her stomach; she didn’t want to either."

The BHC’s Ilieva, too, is outraged.

"These institutions should not exist at all," she said. "The problem is not the low health care standards in the homes, but the way the staff treats these children. Most of them are simply convinced that they are destined to die."

The For Our Children foundation has been placing children in family environments for over fifteen years now. For the last two, they have also been working to convince 200 biological parents to keep their children, and have found adoptive families for 17 more over the past several months.

The process of rehabilitation is a long and slow one for both child and parents, but at the end, what matters are the results.

"She recovered," Louw said with relief. "She is such an amazing child."

Today, Lora is a lively and energetic girl. She speaks two languages – Afrikaans and English, and a little bit of Bulgarian. After 13 years, the family still lives in the country.

"She loves Bulgarian folk music," her mother added.

"I can definitely tell she is Bulgarian."