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World Press photographer captures the intriguing ‘Resignation Syndrome’

BED-BOUND, tube-fed and completely unresponsive: meet the Swedish children with the medical anomaly “Resignation Syndrome”.

Djeneta (R) and her sister Ibadeta are motionless as they battle 'Resignation Syndrome.' (Magnus Wennmann)
Djeneta (R) and her sister Ibadeta are motionless as they battle 'Resignation Syndrome.' (Magnus Wennmann)

HUNDREDS of children suffer from “Resignation Syndrome.” They don’t eat, speak or even open their eyes.

With drip-tubes the only thing keeping them alive, two sisters suffering the condition have been bed-bound for more than two years.

Lying there motionless, you’d think their bodies had shut down after an accident or an illness.

But, physically, there’s nothing wrong with them: these two girls have lost the will to live.

Djeneta and her sister Ibadeta suffer from the condition, referred to locally as “uppgivenhetssyndrom”thought only to exist among refugees and only in Sweden.

The remarkable image was captured by photographer Magnus Wennman and was short-listed in this year’s World Press Photo Contest.

Children affected by the condition start showing symptoms by withdrawing from social activities and speaking less, before finally closing off completely from the world around them.

Experts suggest the conscious part of their brain simply shuts down, forcing their parents to feed them through tubes and put them in nappies — although no children are believed to have ever died as a result of the condition.

Elizabeth Hultcrantz, a doctor who has treated those with the illness, told The New Yorker: “I think it is a form of protection, this coma they are in. They are like Snow White. They just fall away from the world.”

Kids with this condition, referred to by Swedes as “apathetic” children, started arriving in hospitals in the early 2000s and by 2005, more than 400 children, largely aged between eight and 15, had been diagnosed.

Just last year, there were 60 more tragic cases.

Dr Elizabeth Hultcrantz is actively involved in studying the strange illness.
Dr Elizabeth Hultcrantz is actively involved in studying the strange illness.

Most of the children were immigrants from former Soviet and Yugoslav states whose families hoped to forge a better life in Sweden.

The Scandinavian country had become home to many refugees since the 1970s and still accepts more asylum seekers per capita than any other European country — but as regulations tightened, those that weren’t fleeing war-torn zones often had their applications rejected.

These rejections would often take years to come, and the limbo-like status of waiting for their family’s future to be decided meant many children ended up pouring all their hopes and dreams into being granted asylum.

So when the long wait comes to an end, and it’s bad news, some children shut down completely, plunging into a deep coma-like state where they flit on the border of life and death.

Doctors studying the rare condition note that it tends to only affect refugees from eastern Europe, fleeing “holistic” societies where the family unit, and wider society, is always championed over the needs of the individual.

A report by the Swedish government suggested that the stricken children may be acting in line with their society’s unspoken rules, subconsciously giving up the will to live without any direct encouragement in the hope that it will save their family.

Because of this, with no obvious medical cure, many psychologists believe that only the security of permanent residency can bring the children back.

Sweden has become home to many refugee children since the 1970s.
Sweden has become home to many refugee children since the 1970s.

Children making the journey to a new life have developed resignation syndrome when their families are denied applications to remain.

When the photo was taken, the girls in Wennman’s picture lived in central Sweden, in a dormitory for refugees.

Djenata had been unresponsive for two-and-a-half years, ever since she was 12 and Ibadeta, 15, had been bedridden for six months — ever since the day the family’s asylum residency request was denied.

A similar case was reported last year when Georgi, a Russian refugee who came to Sweden when he was five, was told his family’s reapplication to stay in the country had been denied — more than seven years after they first settled there.

After hearing the news, in December 2015, the 13-year-old sunk into a deep depression, stopped speaking, refused to get out of bed and lost 13lb in a week.

He stayed in a deep, apathetic state, limp, lifeless and silent, for five months until, in May 2016, the Swedish government granted the family permanent residency, at the insistence of the doctors treating him.

It took over a fortnight for him to open his eyes, and months after that for Georgi to get back on his feet and start speaking in coherent sentences again but he eventually recovered — with his family’s security acting as a dose of life-changing medicine.

He later described those long, bed-bound months as feeling as if he was lying in a fragile glass box, deep beneath the ocean.

Djeneta (R) and her sister Ibadeta are motionless as they battle 'Resignation Syndrome.' (Magnus Wennmann)
Djeneta (R) and her sister Ibadeta are motionless as they battle 'Resignation Syndrome.' (Magnus Wennmann)

Georgi believed that if he spoke or moved, the glass would shatter and water would flood in and drown him.

The condition is still not fully understood — and some doctors are pushing back against the belief that apathetic children should be left in their comas until the family is granted residency.

Karl Sallin, a paediatrician at Karolinska University Hospital, told the New Yorker: “Another way to give the children hope would be to treat them properly and not leave them lying on a bed with a nasal tube for nine months.”

In response to national outrage at the plight of these children, Sweden changed the rules to make sure no apathetic children are deported — securing the status of hundreds of refugee families in the process.

But while children like Georgi have got their lives back, many more remain as they are — lying prone somewhere in limbo, trapped by a condition nobody really understands.

This article was originally published in The Sun and is republished with permission.

Little Girl Wakes Up From Coma After Hospital Threatened to Cut Life Support

Original URL: https://www.news.com.au/lifestyle/health/world-press-photographer-captures-the-intriguing-resignation-syndrome/news-story/4d8c775eba189b3630471a120e6e49e6