The Sleeping Children

Note: our transcripts are made with a combination of automated software and human transcribers, and may not reflect the audio with 100% accuracy.

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DANA BALLOUT: Before we start this episode, we wanted to note that there are some descriptions of sexual assualt in this episode, as well as general mentions of trauma – particularly when it comes to refugee issues. It may be one you want to hear without kids around.

ZEINA DOWIDAR: So if we can start – if you can tell me your name and how old you are. 

DILAN: My name is [REDACTED]. I’m 14 years old.

ZEINA DOWIDAR: Okay. Do we want Dilan or [REDACTED]?

DILAN: Dilan 

ZEINA DOWIDAR: Okay, let’s try that again. So what’s your name and how old are you? 

DILAN: My name is Dilan. I’m 14 years old.

DANA BALLOUT: Dilan is speaking to our Producer Zeina Dowidar. Dilan is not her real name, we’re using a fake name for her and her family’s protection. 

ZEINA DOWIDAR: And how long have you been in Sweden?

DILAN: 10 years old.

ZEINA DOWIDAR: You were 10 when you came to Sweden? 

DANA BALLOUT: She’s still working on her English at school – her Swedish, and her mother tongue Kurdish, are much better. 

ZEINA DOWIDAR: Also if you want to reply in Kurdish so you can talk more, you can, and then she’ll translate for you.

DILAN: Okay.

DANA BALLOUT: Zeina spoke to her through a translator, and asked if Dilan can recall some of her favourite things to do with her sister.

DILAN: [Speaking Kurdish]

DILAN (VIA TRANSLATOR): Yes, I read in the book every day with my sister and I say please, can you wake up, you and me going to school but she don’t listen to me.

DILAN’S MOTHER: [Speaking Kurdish] 

DANA BALLOUT: This is Dilan’s mother. She’s telling us about when her other daughter, Layla, first started showing symptoms of an illness that would soon change their lives forever. 

DILAN’S MOTHER (VIA TRANSLATOR): For this summer in 2017, she was not feeling good at all. And even one day when she was playing with her sister outside, because she was overthinking too much, and she had a bad headache, so her nose started to bleed. And when her sister tried to come and let me know, she told her not to tell me, and she cleaned her nose herself.

DILAN’S MOTHER: [Speaking Kurdish]

DANA BALLOUT: Everything got worse on the 31st of August, 2017, at the beginning of the new school year in Sweden. Dilan and her sister Layla were outside, playing in the school playground, when Layla’s symptoms suddenly got worse. 

DILAN (VIA TRANSLATOR): When she first sick I said “oh my god what happened” because I’m in school, and she talked to me and said she had a headache. 

DILAN’S MOTHER (VIA TRANSLATOR): it was around one o’clock [in the] afternoon. When I got many calls from the teacher. I was at a dentist appointment, and when I answered the teacher told me to go immediately to the school because my daughter fainted. And then the teacher said that it was like my daughter almost lost her mind. And then when I went to school, and I arrived there, she [had] peed in herself and she was still unconscious. And I was trying to talk to her in her ear, but she didn’t react. I only saw tears from her eyes.

DANA BALLOUT: And since that day, when Layla fainted in the school playground, she’s been what we’ll call “asleep”. Really, it’s more like a state of sort-of sleeping, sort of-coma – all day, every day, for almost five years now. Her parents feed her through a feeding tube, and her body doesn’t move much at all. Her eyes are closed, but she’s mostly conscious. And nobody – not doctors, not psychologists, and not her family – can get her to wake up again.

DILAN’S MOTHER (VIA TRANSLATOR): She’s always the same. It’s been five years and we don’t even understand what is wrong with her, what was her guilt to be like this. It is very, very difficult to have a child with this condition. And you don’t even have any clue why is this happening.

DANA BALLOUT: Today, on Kerning Cultures, a medical mystery that has seen hundreds of refugee children in Sweden – just like Layla – succumb to a sleep-like state known as resignation syndrome.

[STING]

DANA BALLOUT: This story was on our minds for a while. Producers Andrei Popoviciu and Zeina Dowidar have been looking into it for months. Andrei is a freelance journalist and producer based in Bucharest. And he’s been working with our London-based producer Zeina.

DANA BALLOUT: So when you talk about being asleep for months or years, how is that even possible?

ANDREI POPOVICIU: I think particularly for these kids, being asleep is in some ways quite similar to an actual sleep – actually being asleep as a person.

ZEINA DOWIDAR: And the way I sort of describe it is – imagine you’re taking a nap and someone walks into the room and opens the light, you’re you are aware that the light has opened and you’re aware that things have changed in the room, but you’re still in your nap. You’re still asleep. It’s not like you’re going to wake up because of it. And I think that’s sort of the level of sleep that you can imagine she’s at the moment.

ANDREI POPOVICIU: What’s odd about their condition and their way of sleeping is that the sleep is long. So it goes on for months and sometimes years.

ZEINA DOWIDAR: Honestly, we had no idea how to describe the syndrome. We’d been researching it for months, and we were nowhere closer to getting a real feel for what state these kids were in. And so we wanted to speak to someone who’s an actual doctor – someone who could help us figure out what it’s really like. 

DEBRA STEIN: Okay, so my name is Debra Stein and I am a child and adolescent psychiatrist in Toronto.

ANDREI POPOVICIU: Debra works mostly with asylum seeking, and refugee families in Toronto.

DEBRA STEIN: If I were to describe resignation syndrome, as I understand it, to a colleague, I would say that it is a state of true, I guess, shut down and withdrawal from the world – where a person becomes non-responsive to the world. Stops speaking, stops behaving, stops eating, stops responding.

ZEINA DOWIDAR: And the reason we spoke to Debra was because resignation syndrome doesn’t affect all children in Sweden – in fact, there’s never been a documented case of a Swedish child with resignation syndrome. All cases of resignation syndrome have been exclusively in asylum-seeking families – families just like Layla’s.

ZEINA DOWIDAR: And is that something you’ve ever seen in any of the families you work with in Toronto?

DEBRA STEIN: Not in my asylum seeking families, not in my newcomer families. Absolutely not. No.

ZEINA DOWIDAR: Somehow – all these cases are in Sweden. Not in Denmark or Finland, or any other countries with similar climates or geographies or immigration systems. Just Sweden. 

DEBRA STEIN: The Swedes have the same question: why is it that we’re seeing this in Sweden? And they saw – the families they saw who had the resignation syndrome were actually mostly from the Eastern bloc. And they actually, I believe they travelled to those places to actually ask psychiatrists there – have you seen this there? And of course the answer was no, this is not something that we see in these cultures.

ANDREI POPOVICIU: Many people, particularly in Swedish politics, had previously tried to say that resignation syndrome was a cultural phenomenon and would cease to exist if they stopped letting in refugees from countries in the Balkans and the Caucuses – where many of these asylum-seeking families come from. But Debra disagrees with this – she thinks it’s deeper than that.

DEBRA STEIN: I use the term idioms of distress to describe the way we speak distress from our body – so in our behaviour, in very local forms. And so much like there are dialects of a language. There are dialects of distress. 

ANDREI POPOVICIU: Understanding what this means took quite a bit of time, but let me try to break it down for you. Just in the same way that we have different words for ‘ouch’ – so in Arabic, you’d say ‘ayy’, or in German you’d say ‘awa’ – what Debra’s saying is the way our bodies respond to stressful situations is also different. And what you can start to find is almost specific physical responses that you wouldn’t really see in other places in the world. And somehow, something in Sweden was manifesting in these kids as resignation syndrome.

ZEINA DOWIDAR: And to really get to the bottom of this, we had to go there ourselves.

[AMBIENT SOUNDS OF AEROPLANE, AIRPORT]

ANDREI POPOVICIU (VOICE NOTE): Hello Zeina, I just arrived in Stockholm. It’s a little past midnight here, and it’s minus five degrees, so pack warm clothes.

ZEINA DOWIDAR: In the depths of winter, Andrei and I flew to Sweden – where hundreds of cases of resignation syndrome have been recorded. Getting there wasn’t easy – there were many COVID restrictions we had to abide by, and even finding my way to our hostel that first night was a struggle.

ZEINA DOWIDAR: Excuse me, sorry, could you help me figure out how to get this exit? So like I need to go there.

ANDREI POPOVICIU: But Zeina finally found her way, and the next morning, we were off to our first stop on the trip – and probably the most important one.

ZEINA DOWIDAR: While researching resignation syndrome, all our leads led back to one person who could help us – Dr Elisabeth Hultcrantz. We knew that Elisabeth was one of the only people who could help us speak with some families, and learn more about what the syndrome is. But Elisabeth was not an easy nut to crack. 

ANDREI POPOVICIU: Yeah, before I went to Sweden, I’ve been talking to Elizabeth for weeks on end through emails and phone calls. And I felt like she was trying to get a feel of what we were trying to do, what questions we’re trying to answer, what type of story we were trying to tell. 

ZEINA DOWIDAR: She was our only way inside families’ homes, and we needed her to like us – otherwise, our whole trip to Sweden would be basically for nothing.

ZEINA DOWIDAR: Okay it’s one of these homes on the left. No, straight up ahead of it. I guess there would be numbers, right? Is this 12? 22, 18 16. Yeah. And she’s 14. Right? So…

ANDREI POPOVICIU: We were nervous as we pulled up to her home.

ZEINA DOWIDAR: That’s 12, so it must be this one. Oh yeah. I see the number on the post box.

ANDREI POPOVICIU: We were nervous when we pulled up to her home.

ZEINA DOWIDAR: Love the sound of snow!

ANDREI POPOVICIU: Elisabeth greeted us by the door of her home, wrapped in an almost floor-length duck blue down jacket. She waved at us with quite a big smile, her jet white short hair moving only a little in the wind. I had already met her briefly the day before, and so Zeina was definitely the more nervous one between us.

ZEINA DOWIDAR: Did you hug her or did you shake hands or like, what was the vibe? 

ANDREI POPOVICIU: No, she doesn’t want to hug because it’s – 

ZEINA DOWIDAR: Okay. Should we put our masks on?

ZEINA DOWIDAR: But we said our hellos, and slowly settled into the car. We had a long journey ahead of us, and Elisabeth was quick to get straight to the point with me. She had already questioned Andrei the day before.

ELISABETH HULTCRANTZ: So, what is your background then?

ZEINA DOWIDAR: What is my background? Yes so I actually went with Drew to the same university.

ANDREI POPOVICIU: It felt like a challenge to really convince her and show her that we have good intentions and that we’re there to just learn the story.

ZEINA DOWIDAR: As a doctor, she had visited over 100 children with resignation syndrome – trying to support their families in solving the puzzle. And that makes her naturally protective over them. Other people had come to Sweden and told these families stories in ways that were really harmful, even putting the families in danger sometimes. So we really had to work to earn her trust.

ANDREI POPOVICIU: And once she was happy with our answers, Elisabeth was ready to start being interviewed. We did the first interview in the car – we had a few hours to kill before meeting our first family, and she told us how she first got into this work, over 10 years ago.

ELISABETH HULTCRANTZ: It was 2008. I had just started to work for Doctors of the World. And the reason why I worked with them was that I had started to see my coming pension and that I was going to stop working and I wanted to have something meaningful to do. And I realised that I was a bit too old to go out with Doctors Without Frontiers and things like that, So Doctors of the World, they work in Sweden and I would meet the refugees which are in the country. And then I could come home and sleep in my own bed and so on when I was working there.

ANDREI POPOVICIU: While working for Doctors of the World, Elisabeth heard about cases like Layla’s – of kids falling asleep for months or years on end.

ELISABETH HULTCRANTZ: So at that time I had a chance to go and see one child who had resignation syndrome. I was at a seminar somewhere, a women’s seminar. And I overheard a conversation between two women that they were going to see a child with resignation syndrome and she had been laying for one and a half years and she was hidden from the authorities. So they didn’t know about her. So I said, ‘Hey, can I join you and go there?’ because it was on my way home after the seminar. We came there and they let me into this girl. She was, I think, 10, 10 and a half years old. And she was laying in a small room with the shades down and it was completely quiet. It was extremely quiet, and I was sitting beside her and it was so – I mean, I was just – it changed my life. And that was probably, I almost cry when I talk about this, because it’s really influenced me. I was sitting there and the only thing I heard was my own heart banging. Because the girl was completely still, she didn’t move at all. I could see that her eyes under her eyelids were moving a bit, almost like nystagmus, which I am used to. And the only thought I had in my head is, if this had been a Swedish child, she shouldn’t have been laying here for one and a half year with a tube in her nose and diapers. That was the only thing I could see.

ANDREI POPOVICIU: Elisabeth became fascinated with resignation syndrome, and dedicated her life to helping families with kids who have the illness. One of these kids is Layla – Dilan’s sister, who we met at the top of the episode. Elisabeth took us to meet them. It was a four hour drive west of Stockholm, and we had quite some time to get to know each other.

ELISABETH HULTCRANTZ: We have been travelling by car for some hours. It’s very beautiful around us – it’s a pale, December sun. And it’s very much frost around us, it’s very cold now.

ANDREI POPOVICIU: It was freezing – and once again, we were nervous. We didn’t know what to expect when meeting Layla’s family, and we didn’t know what to expect Layla to be like either. But on our trip, we had time to learn about why Layla’s family came to Sweden in the first place. Elisabeth had Layla’s parents’ permission to share their story. Layla and her family came from a small Yazidi village in an area we won’t name for their protection. 

ZEINA DOWIDAR: There wasn’t much in the village and its surrounding areas, and according to them there were often fights between families to secure land for their livestock. As far as Elisabeth gathered from speaking with the family, the back story goes like this: Layla’s maternal granddad had one of those fights with a neighbouring non-Yazidi family. And one day soon after that, Layla’s mom, Bahar, went on her daily walk to the local well to fetch water for her family. But she took way longer than she usually does, so Ahmed, her husband, went to look for her. 

ELISABETH HULTCRANTZ: And there he found Bahar on the ground, unconscious, and she was bleeding.  

ZEINA DOWIDAR: Bahar had run into a group of men from one the other families in the village, who had recently argued with her father. 

EELISABETH HULTCRANTZ: They raped her. Probably all four of them raped her. And Bahar was pregnant in the third month, and this rape caused her to lose her feotus.

ZEINA DOWIDAR: And while her husband Ahmed was trying to support her, nursing her back to life, her dad was enraged.

ELISABETH HULTCRANTZ: While she was laying there between life and death, her father came every day, several times and banged on the doors and windows. And said that because of what had happened to her, he had to kill her because of the honour of his family.

ZEINA DOWIDAR: And so they knew they had to escape. Ahmed’s family sold their livestock to get money for smugglers, who smuggled the couple and Layla and Dilan through Europe and into Sweden. They were still afraid of her father – they told us that he had threatened that if they leave, he’ll hire assassins to kill her, wherever she is.

ELISABETH HULTCRANTZ: He said, I will search for her my whole life and I will kill her as soon as I meet her. That is what the father had said.

ANDREI POPOVICIU: They had been in Sweden since then. 11 years. They had to move around several times, and now live in a small city. 

ZEINA DOWIDAR: Okay. So we’re in the middle of a city centre. It’s a really big square, and there’s a big Christmas tree. We’ve parked outside an apartment building, going up the stairs now.

ANDREI POPOVICIU: Their home was on the fourth floor of a council estate on the corner of the main road. 

ZEINA DOWDIDAR: Hi, hello!

ANDREI POPOVICIU: Once we were upstairs, we found ourselves in a one bedroom apartment for a family of five. Their living room walls were adorned with peacock images, which is the Yazidi God the community worships. Layla’s younger siblings, Dilan and Memo, greeted us with lots of excitement, particularly about our equipment. 

MEMO: Helloooooo my name is Memo. 

ZEINA DOWIDAR: Layla was in a wheelchair with the back leaning at a 45 degree angle. Her parents had dressed her in a pink sweater and blue pants, and her hands rested on her lap, almost holding each other. Her eyes were closed, but her sister Dilan would always make sure she was facing the TV, talking to her and asking her whether she wanted Dilan to change the channel. Layla didn’t respond – she hasn’t responded to anyone in over five years.

ANDREI POPOVICIU: While we were speaking to her family, she was sitting with us in the living room, in her wheelchair, but she wasn’t interacting at all. You could still feel her presence though – in the way her siblings moved around her and talked to her, in the way her parents glanced over at her every minute to make sure she’s okay. Elisabeth even gave her a present when she first entered the house – one that lay on her lap until her mother picked it up later.

ZEINA DOWIDAR: Her parents feed her every day through a feeding tube and change her diapers. They massage her muscles to try and make sure they don’t atrophy, and talk to her all the time, to maintain a sense of normalcy. Layla looked exactly the same when Elisabeth first met her 5 years ago.

ELISABETH HULTCRANTZ: The first time I met this family was in the fall [of] 2017. 

ZEINA DOWIDAR: Elisabeth had heard about the family through her contacts, and went to visit them after Layla fell asleep. 

ELISABETH HULTCRANTZ: And when we came to, to the home, I found the girl laying, like they always do very, she seemed almost younger than she was. And she was nine, I think, but she looked younger really and rather short, and she was laying in completely quiet in her bed. 

ZEINA DOWIDAR: But Layla wasn’t always like this. Her parents said that back in their home country, she was always an active child, running around and making trouble. 

LAYLA’S MOTHER: [Speaking Kurdish]

LAYLA’S MOTHER (VIA TRANSLATOR): Layla was very naughty when she was growing up. She was always clambering on the doors. And she was always hurting her fingers because she was a very naughty and she didn’t like to sit still in one chair at all.

LAYLA’S MOTHER: [Speaking Kurdish]

LAYLA’S FATHER: [Speaking Kurdish]

LAYLA’S FATHER (VIA TRANSLATOR): We had a very nice life there with our neighbours and relatives. We were all Yazidi people in the village. We spent our childhood together with my wife there. We both grew up there and we both had a nice life there, but then we got some problems and we had to come to Sweden.

ANDREI POPOVICIU: They picked Sweden because they knew no one there – no one who could tell Bahar’s father that they saw her. But that also meant that they had no one to help them when they arrived – and the first few months were tough. 

LAYLA’S FATHER (VIA TRANSLATOR): It was very, very cold. In our country it wasn’t as cold at all. When we arrived, it was very cold, even for us and the children as well. Then we had to buy winter coats and we were like poor people who are arriving in a new country who knows no one. And don’t even know where to buy food et cetera.

ANDREI POPOVICIU: But soon, the family settled in, and the kids began making friends at school. They started to learn Swedish, and over the years integrated into Swedish life. Despite this, they continuously struggled to secure permanent residence – the migration agency made it very difficult for them to do so.

LAYLA’S FATHER (VIA TRANSLATOR): So here in Sweden, I’m not here for the money; I’m working and I don’t really need the money from the government. I don’t even have my own apartment. I don’t even have a car here, but I just had the problem that makes me not be able to go back to my home and they should understand this. And I really don’t understand what kind of humanity this is, that they are not able to understand this.

ANDREI POPOVICIU: While Sweden has always been more welcoming to refugees than other European countries, they have a standardised list of reasons someone can secure residence for. It’s based on the UN Convention Relating to the Status of Refugees, which underlines EU regulations on seeking asylum. The Swedish Migration Agency defines a refugee as a person who has, quote, “well-founded reasons to fear persecution due to; race, nationality, religious or political beliefs, gender, sexual orientation, or, affiliation to a particular social group.” 

ZEINA DOWIDAR: The threat of honour killing didn’t really fall under any of these categories – especially because Bahar couldn’t prove that it would happen. 

LAYLA’S FATHER (VIA TRANSLATOR): Life is very difficult without a residence permit here in Sweden, wherever you go, they’re asking you for your residency for whatever you want to do, they ask you for residency. Sometimes I’m not even able to sleep during the nights, and I’m always wondering what is going to happen.

ZEINA DOWIDAR: The insecurity of not being able to get their residence weighed heavily on the entire family. It restricted their movement, and made it hard for them to do anything – even for Ahmed to get a job. In 2017, almost 6 years after they first moved to Sweden, Layla started to get upset seeing her friends travel to different countries each summer, while she had to stay in her little village for years without leaving. 

LAYLA’S FATHER (VIA TRANSLATOR): I remember that so well, it was in 2017 that she first had symptoms and started feeling bad. So the beginning of the school. She was a very energetic child but after those times she almost completely changed, and she started to get worse and worse always. Children are supposed to have a good life but the immigration agency forced us not to be able to provide this good life to the children. And this was a shock to her. 

ZEINA DOWIDAR: Her symptoms gradually worsened. She went from being more quiet at school, to being more quiet at home, before becoming mute entirely. Her energy was decreasing day by day and she was moving less and less. Until that day at school, when she passed out. I asked Elisabeth what her conversation was like with the parents when they had first gotten back from the hospital. 

ELISABETH HULTCRANTZ: I told  them that she seemed to have got a very thorough examination at the hospital. They had done all the brain scans and all that stuff, and they hadn’t found anything [is] what they had told the parents. But they were still worried, and of course they thought that the child was dying more or less.

ANDREI POPOVICIU: But Elisabeth had good news.

ELISABETH HULTCRANTZ: And I said that, I didn’t know how long she should be in this condition because you don’t know that. But I knew, I told them, that all the children I had seen have finally woken up. And we only have to figure out more or less what has caused the reason.

ANDREI POPOVICIU: After the break: Elisabeth comes back with answers on how to wake Layla up.

[MIDROLL]

ANDREI POPOVICIU: We’re back. Elisabeth was certain that, as soon as they figured out what caused Layla’s slip into resignation syndrome, they could figure out how to wake her back up. And on one of our many car rides with Elisabeth, she told us that basically, the way resignation syndrome works is that it’s triggered by trauma.

ELISABETH HULTCRANTZ: A double trauma – the first trauma in their home country and the second trauma in Sweden.

ANDREI POPOVICIU: Zeina explained this to our team in one of our many calls about this story.

ZEINA DOWIDAR: You need two traumas for the kid to be in such a severe traumatic condition. The first trauma is something that usually happens in their home country and is usually one of the triggers for them leaving in the first place.

ANDREI POPOVICIU: In Layla’s family’s case, this was Bahar’s rape and her father’s threats of killing her in the name of family honour. 

ZEINA DOWIDAR: And then the second trauma happens usually in Sweden when they are almost threatened into going back into that first traumatic place to begin with. So let’s say they’re facing deputation or they’re refused asylum. And the kid in their head is thinking if I leave, that means I have to go back home. And at this point they usually associate home with traumatic things and memories. And so that sort of second trauma is what precipitates resignation syndrome starting.

ANDREI POPOVICIU: In 2017, when Layla noticed the way her friends could travel freely, the realities of her situation began to sink in. The threat of deportation is the singular dominant reason as to why kids fall into resignation syndrome. Sometimes it happens when kids have to translate rejection letters to their parents from Swedish to their native language, or when they see their friend getting deported, or when they have to go to immigration lawyers and courts over and over and over again.

ZEINA DOWIDAR: And this is something the Swedish government recognised. After years of approving permanent residence for families with resignation syndrome on an ad hoc basis, in 2013 the Swedish Board of Health and Welfare began to officially advise that a patient will not recover until their family have permission to live in Sweden. 

ANDREI POPOVICIU: “A permanent residency permit is considered by far the most effective ‘treatment,” the manual says. “The turning point will usually be a few months to half a year after the family receives permanent residence”.

ZEINA DOWIDAR: This aligns with Elisabeth’s findings, from her work treating hundreds of patients since 2008.

ELISABETH HULTCRANTZ: We know for sure, that if the whole family gets security, some kind of security, the child will recover. They don’t step up the day they get permission to stay, it takes – for the ones who have got permanent permission to stay – we have so many now that we can do statistics – it takes about two months before they show the first signs. The first sign is usually that they open their eyes.

ZEINA DOWIDAR: And while the government supported the Board of Health and Welfare’s findings, everything changed in 2015 when Sweden received more than 150,000 asylum applications. This was happening across Europe, and it shifted European politics towards a populist tone where conservative politicians whipped fear around migration. It was the same case in Sweden. At the time, the Sweden Democratic party – a right wing party – was gaining influence, and they convinced the rest of the government that they should not be handing out permanent residencies to refugees anymore.

And so they put in a law saying that refugees can only get temporary residences of up to 13 months each time – leaving families in a perpetual state of insecurity. 

ELISABETH HULTCRANTZ: And with a general insecurity in the family, the children don’t wake up.

ZEINA DOWIDAR: But Elisabeth found through her research and time with these families that security doesn’t just come from immigration papers. Security can be perceptual. Perceptual security is this idea that you don’t necessarily need a residence permit for these kids to feel secure – they just need to feel like their families and siblings are safe and happy. If families can maintain and grow an ordinary life, one with as little stress and fear as possible, children with resignation syndrome can feel that too, and start to wake up. That’s what Elisabeth has advised all of the families she works with to do, including Layla’s parents. 

ZEINA DOWIDAR: Can you ask then the parents what sort of things that they do to take care of Layla when she was asleep, sort of the routine of taking care of her and, what sort of things they have to do every day?

LAYLA’S MOTHER: [Speaking Kurdish]

LAYLA’S MOTHER (VIA TRANSLATOR): I wake up early in the morning and at 7:30, I give her her breakfast through the tube and then I take her to school. And there at school, the teachers are taking care of her later on. I take her back and sometimes I take her on outside the walks. And when she has doctor appointments, I take her to the, to the doctor.

ANDREI POPOVICIU: Layla’s parents take her to school, every day, to have her feel a sense of normalcy. The school is wheelchair-accessible, and the teachers wheel her around from class to class. She sits in the back with her eyes closed and her back leaning against the 45 degree angle of her wheelchair. She doesn’t raise her hand, or respond to the teacher’s questions – but she’s there.

ZEINA DOWIDAR: But not everyone is supportive of this theory.

KARL SALINN: So my name is Karl Salinn, I’m a paediatric neurologist. I’m 44 years old and I’m currently as well doing a PhD project on resignation syndrome.

ANDREI POPOVICIU: We spoke to Karl while we were in Sweden, to better understand the different ways doctors and scientists have tried to wake these kids up. Karl started working on resignation syndrome when he realised he didn’t agree with the status quo – he fundamentally disagreed with the main understandings of the syndrome.

KARL SALINN: There are reports already in the literature that that was available a long time ago, quite a substantial amount of children that haven’t claimed they had suffered any trauma and their parents hadn’t claimed it either. So there you didn’t even have the trauma element. And then of course, another finding that has been out there all the time in the literature is that there are other immigrant groups that describe similar sorts of previous trauma and live under the same conditions of stress in Sweden. However, they never develop resignation syndrome.

ANDREI POPOVICIU: Karl thinks resignation syndrome can’t really be classified as a medical disease. He thinks that it should instead be classified as a culture-bound disorder.

KARL SALINN: So what seems to stick out in terms of cultural bound phenomena is that they are more determined by the social cultural factors than by the biological factors that you would normally take to be underlying a medical condition. 

ANDREI POPOVICIU: Basically, what he’s saying here is that there’s something in these groups of children’s cultures – maybe something social, or something genetic, or something psychological – that is making them respond to trauma by falling asleep. In that sense, it’s bound to the culture. This implies that its really the family’s own culture and society that leads to resignation syndrome.

ZEINA DOWIDAR: Karl’s theory began becoming more popular in 2015, when Swedes faced one of the biggest waves of immigration the country had seen. And in the press, they saw more and more cases of resignation syndrome – with kids, falling asleep and often gaining asylum because of it. And so, public opinion began turning. Some said that these parents – traditionally from former Soviet or Yugoslav countries – were somehow coaxing their kids or coercing them into sleeping, as a somewhat “Trojan Horse” to get asylum.

ANDREI POPOVICIU: This was one of the reasons why Elisabeth was so apprehensive about speaking to us to begin with – she was worried we’d spin our story into a negative press piece, just like many had done before us. She was even apprehensive about trying to explain exactly why the syndrome only happens in Sweden, or whether culture is a part of it.

ZEINA DOWIDAR: Instead, Elisabeth kept coming back to how to help the kids get better – giving them security. 

ELISABETH HULTCRANTZ: Security is a concept. You feel it’s a Maslow concept, which you cannot describe, but it is something which the parents transmit with how they hold their child and how they how they interact.

ANDREI POPOVICIU: But Karl disagrees. He thinks quite the opposite – you need to focus on the child, and that’s the only way you’ll wake them up. Even if that means taking them away from their families. 

KARL SALINN: So there were very clear statistical results, even though this was a small treatment group that showed that the best treatment that had been offered at that treatment home anyway was separation and abstaining from involving the residency permit and the asylum process, which was interesting because it was the opposite of the recommended treatment that the Swedish National Board of Health and 

Welfare had a few years earlier.

ANDREI POPOVICIU: Karl’s experiment showed that the best recovery for these kids is to separate them from their families – basically, the opposite of Elisabeth’s theory. That actually, they needed to be removed from anything that could be a source of stress for them. If they’re concerned about their family’s well being or deportation status, they won’t have the space to recover – unless you separate them. We asked Elisabeth how she felt about this theory.

ELISABETH HULTCRANTZ: I don’t want to discuss other people’s results, but I can say that that paper has a very low power.

ZEINA DOWIDAR: In the end, Elisabeth doesn’t fundamentally disagree with Karl – she thinks that if the family agree, maybe separation for short periods could be beneficial for the kids – especially if the parents are struggling too much to see their child in such a condition.

ELISABETH HULTCRANTZ: It is really [that] you give them perceptual security. They don’t have to suffer from the parent’s a bad mood the whole time. And I agree to that. I think that’s very good. That’s why I think that the whole family should be taken care of to start with.

ANDREI POPOVICIU: But Elisabeth still thinks that separation should really only be considered on a case-by-case basis. Many of the children who fall into resignation syndrome have previous trauma of separation or loss, and separating them from their families could only dig them deeper into the syndrome, rather than get them out of it. And that was exactly the case of Ronnie.

ZEINA DOWIDAR: So, when I ask for your name, I want you to tell me your fake name, not your real name. Are you ready? So, what is your name?

RONNIE: My name is Ronnie.

ZEINA DOWIDAR: And why did you pick the name Ronnie?

RONNIE: Because it’s Cristiano Ronaldo.

ANDREI POPOVICIU: We met Ronnie along with his parents and younger siblings in their home in a small village several hours from Stockholm. We’re using a fake name for Ronnie for his family’s protection. They have been in Sweden since 2014, and Ronnie fell into resignation syndrome in 2017. A year or so into his illness, the Swedish medical board asked his parents whether they would be willing to separate with him. They wanted to see if it would help him wake up. But Ronnie’s parents refused – in large part because of Ronnie’s childhood history of separation.

ELISABETH HULTCRANTZ: He had already, when he was three years old, his uncle was killed – murdered. And when he was five years old, he had to leave his grandparents and another uncle. So he had been separated from other people earlier, and to separate him from the last connection he had in the family I don’t think that should have made it.

ANDREI POPOVICIU: A few years later, in 2020, when COVID-19 swept the globe, Sweden stopped many deportations – and with the atmosphere of relief in the family home… Ronnie woke up.

ELISABETH HULTCRANTZ: And we couldn’t see, he woke up during the perceptual security anyhow. So it was not necessary to do that. 

ZEINA DOWIDAR: Ronnie doesn’t remember much about being asleep, and he doesn’t like talking about it – but he does love talking about Cristiano Ronaldo.

RONNIE: I don’t know, I just, when I start looking at him when he’s playing football, I just think he’s the best. And I like him. And I like his name too.

ZEINA DOWIDAR: Ronnie’s sister, Yulia – and that’s a fake name too – was sitting next to us when we were doing this. She was really keen to be recorded. 

ZEINA DOWIDAR: Do you think he could be like Ronaldo?

YULIA: Not really. Another football player maybe. A star.

ZEINA DOWIDAR: She thinks you can be a football star.

ZEINA DOWIDAR: I asked Yulia to tell us how she felt that first day when Ronnie recovered from the syndrome.

YULIA: They just asked me – his friends asked me questions, like ‘is this for real?’, ‘I don’t believe it’s for real’. They were really shocked. Like I was like happy for him to meet his friends. Because the only thing he did was lay on the bed and that was kind of sad.

ANDREI POPOVICIU: Just like with Yulia and Ronnie, Layla’s connection with her siblings is very strong. Dilan thinks about her sister every day, and talks to her all the time. She wasn’t keen to talk on tape, but she told us how sad it made her to see her sister on the wheelchair – how she liked to read to her her favourite books, or talk to her about school, or reminisce about how they played basketball together. Layla’s family hopes that one day she’ll recover, and go back to her old self. But for now, they celebrate the little wins. A few months before we went to see Layla’s family, they had a big win – Layla opened her eyes for the first time.

LAYLA’S MOTHER: [Speaking Kurdish]

LAYLA’S MOTHER (VIA TRANSLATOR): It was actually Dilan who made this happen. Elisabeth was here and we were eating on the table, but Dilan was very angry and she threw all the things on the table, on the floor. And she was very angry. And then, this made Layla kinda wake up. And then when we saw her that she opened her eyes, we were very, very happy.

ANDREI POPOVICIU: It wasn’t for very long – just a second, and very, very faintly – but it was an improvement. She was finally getting better.

LAYLA’S MOTHER (VIA TRANSLATOR): ​​In the beginning, she had no reactions at all – not even one interaction. But now she sometimes opens her eyes and sometimes she moves a little, very little, but she still doesn’t eat. She doesn’t talk. She’s been like this.

ZEINA DOWIDAR: The family were really focused on maintaining a sense of normalcy for Layla, in the hopes that it would speed her progress in waking up. And so, while we were there, Elisabeth told me to go introduce myself to her, and say hi.

ZEINA DOWIDAR: [Speaking in Arabic to Layla]

ZEINA DOWIDAR: Elisabeth motioned to me that I should try and see if she can squeeze my hand – apparently she had begun sometimes physically responding to people only in the last few months.

ZEINA DOWIDAR: Can you squeeze my hand? Yeah I can feel your hands moving!

ZEINA DOWIDAR: In the months since we’ve recorded this, Layla hasn’t shown any more signs of improvement. But her family are hopeful – hopeful that after five long years, she’ll finally wake back up. It’s been a tough time for them, with a family member passing away. But Elisabeth has been there for them – like she always has. 

LAYLA’S FATHER: [Speaking Kurdish]

LAYLA’S FATHER (VIA TRANSLATOR): I’m a foreigner, like a stranger in this country. I have no one, but Elisabeth is like a mother and she’s like a family for me. And when I see her, I feel so much relief and very good, but the problem is that we are far away from each other and we’re not able to meet so often. And I have a child who is sick. If she wasn’t sick, I would, of course go more often to see her because she’s my only family here. Elisabeth has always been with us through the difficult and the happy times as well. She’s always been with us when we were having bad days and we wish her to always be with us on our good days as well. 

ZEINA DOWIDAR: This episode is dedicated to my grandfather who passed away two months ago. We spoke about the syndrome and my trip several times when I visited him in Cairo. He was a journalist himself, who had worked on many incredible stories, and so he was always very excited to hear about my work. When I was back in London after Christmas, he’d mention the story every time we called and ask how it’s going, and when it’s coming out.

It’s funny I don’t think he ever got the hang of what the podcast is – he always thought it was some sort of radio show or some sort of audio piece – but he was excited nonetheless. 

When I was out in Sweden doing my first real reporting trip – I felt just like him. A real journalist, going out to tell a story that matters. it devastates me that he won’t get to hear this story – I really wanted him to. I was really looking forward to hearing what he’d think, what questions he’d have, what it would remind him of from his own travels and work. Sweden was the closest I felt to him, journalist to journalist. 

It made me so happy to see how proud he was of me. I really hope this episode makes him proud.

DANA BALLOUT: This episode was produced by Zeina Dowidar and Andrei Popoviciu, and edited by me, Dana Ballout with additional support from Alex Atack and Nadeen Shaker. Fact checking on this episode was done by Deena Sabry, audio editing by Youssef Douazou, and sound design and mixing by Mohamed Khreizat.

ZEINA DOWIDAR: There are a lot of people to thank today. Thank you to Amina Khalil, our incredible interpreter who brought these stories to life. Thank you to Dr. Elisabeth Hultcrantz who shared her experience with us – spending three days with you was absolutely wonderful. Thank you to Dr. Karl Salinn and Dr. Debra Stein. And finally, thank you to the two families who shared their homes and lives with us. And thank you especially to Dilan, Memo, Ronnie, and Yulia for being such good sports. 

DANA BALLOUT: If you want to find more resources about this syndrome, or hear our bonus episodes with these families, sign up to our Patreon to get unlimited access to our feed. Zeina and Andrei will be sharing photos, videos, and reflections there too on their trip.

Thank you, and see you next week.

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