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.

After the baby was delivered, no one brought her to her mother, not even to be fed. Nobody, not even the doctors, offered an explanation. 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 recently to Australia, for a life-changing surgery.

But when her father takes her for a walk in Kragujevac, her hometown 120km 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.

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 (A$488) per month to institutionalise 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.

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 three 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 for frequent specialist attention, 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.

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 centre houses 150 infants, children, and young adults with disabilities.

With hindsight, Jasmina realises that the decision to leave Juljia at the institution was not good for her child. True, the doctors and staff helped and supported herself and her husband, and Juljia received specialised medical care, 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.

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 realised 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 just wasn’t enough staff, according to Jasmina, to keep these children occupied

Juljia was lucky. 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 three, 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.

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 favourite 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 institutionalised 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?