The day Julija was born should have been a day of celebration for Jasmina and Ivica Čuković, a Serbian couple, who had tried for years to have a baby. But the events following their daughter’s birth in a public hospital in Belgrade, Serbia’s capital, left them confused and distraught.

Julija Čuković, who spent ten months of her life in an institution, at home in Kragujevac with her parents, where she enjoys to play with her younger sister, also in the photo. 

© 2016 Zoran Stamenković

After the baby was delivered, no one brought her to her mother. Nobody, not even the doctors , offered an explanation. Nobody brought the newborn back to her mother at feeding times, either. The couple asked about their daughter’s whereabouts and waited anxiously for an answer. Yet all Jasmina was told was not to cry. “You will have another child,” the nurses said – as if a newborn could be discarded and replaced like a broken doll. Julija, it seemed, had been written off. It was assumed that not even her parents would want her around.

Four years later, Julija, or Juca as her parents call her, is a happy, trusting little girl with a mane of blond wavy hair and a lopsided smile. She has been all across Serbia and even to far-away Australia, where she became a bit of a local celebrity. But when her father takes her for a walk in Kragujevac, her hometown 120 kilometers southeast of Belgrade, he is often met by looks of furtive pity or outright prying.

Julija was born with a rare genetic condition called Apert Syndrome. Children with this syndrome have fused skull bones, resulting in distorted facial features, vision and hearing loss, trouble with breathing and eating, and learning difficulties. In Julija’s case her fingers and toes have not separated either, which makes holding a crayon or picking things up difficult. When her parents finally learned about Julija’s disability, they were told that Julija would not live long and had best be placed in an institution.

A living room in Veternik Institution where children and adults with disabilities spend most of their days. There are no toys, education materials, or carpets on the floor. The only available source of stimulation is a TV attached to the wall. 

© 2015 Emina Ćerimović for Human Rights Watch

It was the hardest moment of their lives. But what upset the couple most was that nobody suggested an alternative solution, nor did anybody provide advice about where to find support for parents in their situation. The doctors had simply suggested what was and still is common practice in Serbia.    

Across the country, hundreds of children who, like Julija, were born with disabilities, are separated from their families and placed in large residential institutions, often far away from their homes. There they receive little or no personal attention, Human Rights Watch found in a new report, “’It is my dream to leave this place.’” Many will spend their entire lives in institutions, often neglected because there is not enough staff, and without contact with their families, as many parents don’t have the resources to visit. The vast majority of these children have no access to education. They have no privacy, and guardians or others make all their decisions for them – even when they reach adulthood. Confined to beds without any stimulation or subdued with mood-altering medication, many grow up totally isolated from society, stunted in their emotional, physical, and intellectual development.

It costs the Serbian state EUR 320 per month to institutionalize a single child, but it is often the only option families have. The alternative, community based support services for children with disabilities and their families, would have to be funded by the municipalities. These either do not have the revenue or the commitment to provide such services.

Hundreds of Serbian children with disabilities face neglect and isolation in institutions that may lead to stunted intellectual, emotional, and physical development. 

For three months following Julija’s birth, Jasmina and her husband ferried their daughter across the country in search of specialists who could help. The advice they received was always the same: Place the child in an institution. It’s best for you and her. “One doctor even told us that it will be a torment for us to keep her with us and that we might not get anything back in return,” Jasmina told a Human Rights Watch researcher, Emina Cerimovic. “As if my child was a burden for me. None of these doctors were thinking about what is best for the child.”

By the time she was barely older than 3 months, Juljia had undergone two surgeries on her head and had spent a month in intensive care with pneumonia. Because of her severe breathing problems and her need of frequent specialist treatment, the Čukovićs decided with heavy hearts to place her in an institution for children with disabilities in the capital, where she would have quick access to emergency care. Leaving their baby daughter in the care of strangers, but in close proximity to a hospital, seemed the only way to keep her alive.

Legally, her institutionalization should never have happened, as placement in institutions for children under age 3 had been prohibited a year earlier under the Law on Social Protection. In reality, however, babies with disabilities are still being placed in institutions, including, apparently, directly from maternity wards. In many cases, a lack of health care in the communities is why parents feel they have no choice but to leave their children in far-away institutions.

 

Julija spent 10 months in the Zvečanska Center for the Protection of Infants, Children and Youth in Belgrade, although her parents brought her home for frequent visits. The center houses 150 infants, children, and young adults with disabilities. “When visiting such premises, you would expect laughter, children crying, clinging onto you,” says Cerimovic,who visited Zvečanska and four other large social welfare homes during her research. “Not in these institutions. There was hardly any response from the children. It was really eerie.”

With hindsight, Jasmina realizes that the decision to leave Juljia at Zvečanska was not good for her child, and that access to specialized medical care alone may not always save lives. True, the doctors and staff helped and emotionally supported herself and her husband. But when she visited her baby only days after leaving her in the institution, “nothing had remained of that child who used to smile and coo,” she recalls. “She had a lost look in her eyes, had visibly lost weight and was sad in a way.” Shortly thereafter, Juljia had a bout of pneumonia and barely made it out of the hospital alive.

Marina  [pseudonym], a 4-year-old girl with developmental disabilities who spent ten months of her life in an institution, with her foster sister. 

© 2015 Jasenko Rasol for Human Rights Watch

Jasmina and her husband grew concerned about their daughter’s change for the worse. When Juljia spent weekends with them she was a much happier child. But “the only people who could provide us with some kind of protection or help were in Belgrade,” Ivica says, trying to explain why they kept taking her back to the institution. Besides, the staff at Zvečanska always seemed helpful and had experience working with other children with similar conditions.  Only now, with Juljia back at home with them, does Jasmina recall disturbing scenes she tried to downplay in her mind, like  a little girl sitting in a chair alone all day without even a doll or a picture book to keep her occupied. “I saw her often,” she says, “sitting there in her chair all alone. And I’ve thought about this recently and realized that Juljia could have been sitting there like that girl in her seat, alone, and that is how her days would have gone by.” There simply wasn't enough staff, according to Jasmina, to keep the children occupied. 

Juljia was lucky in some ways. She had parents who worked tirelessly to find help. Ultimately, a relative in Australia made contact with a specialist at the Australian Craniofacial Unit in Adelaide. Supported by private fund raising efforts and the unit itself, Juljia underwent life-changing surgery to reshape her skull to make more room for her brain. When she left the hospital, having just turned 3,  she did not have her blond ringlets anymore. But people in the streets who had read about her case in local media treated her like a celebrity.

A room in the ward for the “most severely disabled” in Veternik home for children and adults with disabilities. Children are placed in the same rooms as adults and up to eight people live in one room. 

© 2015 Emina Ćerimović for Human Rights Watch

Back home, surrounded by loving parents, toys, and a baby sister, Juljia is thriving. She has put on weight and has not only learned to sit, which she was unable to do when her parents brought her back from Zvečanska, but also to walk. Unlike so many children in institutions, she gets to wear her own favorite clothes. Her room is bright, spacious and cozy – a stark contrast to a single windowless room where some children spend years.  

Julija’s journey has only just begun. Her fingers need to be unwebbed. Her teeth are not growing properly. She will need speech therapy plus another skull operation as a teenager. And her breathing and her eyes have to be managed constantly. All of this requires specialist medical care lacking in Serbia – specifically, a craniofacial unit in a hospital –and time that her parents will find hard to make. As long as the government opts to fund institutionalized care rather than invest in community-based services for children with disabilities and their families Jasmina and Ivica face a difficult choice: Either one of them gives up their job, leaving them without enough money for Juljia’s medical needs, or Jasmina goes back to work when Julija turns five. But then, who will take care of Juljia?