Unaccopanied asylum-seeking minors: so strong and yet so fragile

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Some die young. Some make it to a safe haven. And then what? The current prognosis is that Sweden will host over 33 000 lone asylum seeking minors this year. And who knows how many next year? Although this is a badge of honor for Sweden because it means that it is the best country in the world to be a child in, it entails a responsibility that goes beyond providing for the housing, physical health and safety of these adolescents. The exposure to traumatic events is unanimous in these youth and many of them experience posttraumatic stress symptoms, depression, and anxiety.

Make no mistake. These young boys and girls are strong, they have seen and experienced things that would brake down elite soldiers and they still get up, go to school, try to make friends and hope for a better future. They are resilient and work very hard to learn a new language, customs, and build themselves a life, which they often accomplish (reference in Swedish on labour market participation).

But some are haunted by events of the past in a way that severely affects their mental health. Intrusive pictures keep entering their minds, however hard they try not to focus on those bad memories. It’s hard for them to fall asleep, they twist and turn in bed. Even if they do long to sleep they dread nightmares that are bound to come. They wake with a startle, in agonising fear, sweaty, breathless, hurt and alone. Then it starts all over again: the unwelcome images and thoughts, the trying to push them away, the impossibility of NOT thinking about it all, the feeling that they are going mad.

Sometimes, flashbacks also come during the day. It often catches them off guard, the images forcing themselves into their thoughts, images of wrecked bodies, shootings, explosions, the brutality of war, the cruelty of mankind. Loud sounds startle them and certain situations or places, or even smells, work as triggers for bad memories so they try their best to avoid these things. Their bodies are constantly alert: ready to run away from danger, jumpy, suspicious.

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Photo: Free1Designer

This is all very hard to see for many adults, especially when they cannot offer comfort or relief. Personnel working at the special care homes under the auspices of social services (HVB-hem), where many of these children live in Sweden, have no education about post-traumatic stress and are offered no support. They are left to their own devices when the night settles in and anxiety vibrates in the air, occasionally interrupted by muffled cries.

What’s worse is that longitudinal follow-up shows that these mental health problems will not simply disappear over time. Research done on asylum-seeking children in Scandinavia suggests that a significant proportion of those who have experienced war trauma develop persistent post-traumatic stress disorder (PTSD), depression, and anxiety. This is also true for children who come with their families, but unaccompanied minors lack parental support in coping with their traumas, so their needs are even more dire.

Luckily, there is a program called Teaching Recovery Techniques, developed by the Children and War Foundation in Norway. It was developed for use in low-income countries. So its low cost and pragmatic approach to training and distribution comes very handy now when we have a problem of such magnitude at our doorstep.

Teaching Recovery Techniques is a cognitive behaviour therapy based program, focusing on techniques that help children gain control over their intrusive memories, nightmares, arousal, and their tendency to avoid triggers. There is also some basic psychoeducation about the nature of posttraumatic stress and the physical symptoms often experienced.

The program can be delivered by people without previous experience of psychological work as a first line of treatment for posttraumatic stress symptoms. It comprises five 1,5 hour sessions in a group. For children who still have severe problems after TrT, more specialised interventions are needed.

I hope that my town, Uppsala, will show leadership in Sweden by being first with implementing TrT in the special care homes. I have brought their attention to the program and offered my support in its evaluation. As with all new methods or old methods in new settings, care should be taken to evaluate what works best and to always avoid harm.

Right now, however, harm is done by untreated symptoms and by adults who unintentionally make matters worse. They advise these youngsters not to think too much about the past (try hard NOT to think of a red flower for 30 seconds and see how you go) and help them avoid triggers to keep them calm (when they in fact need to be carefully exposed to triggers).

Some die young (the link will take you to the Swedish singer Laleh’s song, performed at the memorial concert for the victims of the Utoya shooting in Norway). Some make it and we should do our best, not based on “common sense” or amateur psychobabble, but evidence, to help them make use of their enormous strength for the benefit of their futures, their families and society.

We know that apart from attending to trauma-related symptoms, social support, strong peer relations and low levels of daily  hassles are factors that predict good outcomes. So let’s all get to work!

 

The primacy of caring

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Everything you knew to be true about the importance of a warm and caring relationship with an infant is true, on the gene and brain anatomy level. It is rather inspiring when studies from neurobiology show you how it actually works.

Take a rat pup and let it be taken care of by a low caring rat mom. A mom who doesn’t groom, lick and arch her back to allow effective sucking. After six (6!) days of such low caring, the estrogen gene in the thalamus – an inner part of the brain – of the rat becomes modified through epigenetic mechanisms. So she herself becomes a low caring mom, because the gene responsible for her caring behavior has been modified. If you let a high caring mother adopt this poor rat pup, the modifications of the gene can be reversed. If you are quick and the adoption happens before day 21. If not, changes are permanent.

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Maternal caring in rhesus monkeys affects the development of the amygdala – the part of the brain that is most commonly associated with attachment and fear. In functional MRI studies on the reactions infant cry elicits in the adult brain, it is their amygdala we look at. Simply put, adults who have a secure attachment pattern react to infant cry by caring behaviour, i.e. they report they want to pick up the infant, give it food, soothe it, check diapers, etc. Adults with insecure attachment patterns show more irritation and react less adequately and sensitively; they more often think the infant is just “acting out”.

It seems that maternal care in rats and rhesus monkeys, especially the absence of rejection, is vital for emotional functioning and learning. It keeps the infant brain in a condition of plasticity, where signals to the prefrontal cortex, where more of the mature decision making will take place, get blocked.

The point of this blocking is that before youngsters establish mature pathways to automatically judge the safeness of a situation to make vital decisions, their brains should be “open” for safe learning. Because fear is a primary drive, if the mother does not provide safety, learning about how to keep safe will become a primary learning objective and decrease the ability to learn other things.

In the brains of post-institutionalised children, more mature patterns of amygdala-prefrontal cortex connections are found. These children have a shorter period of brain plasticity due to their adverse circumstances, where they had to learn to rely on themselves much earlier than is useful in terms of learning other skills. Arguably of course, it is effective for their survival.

So what do we make of this? Is our fate as humans sealed after the first few months of life?

Well, the bad news is that it could be. The good news is that humans have a prolonged sensitive period so we have more than the rat’s 21 days to make a difference. If the mother of an infant is not capable of sensitive caring, maybe the father is. Or an aunt, a grandmother, maybe an early childhood worker.

There is also ample evidence to support the effectiveness of interventions to increase maternal sensitivity using video-feedback. From the infant’s point of view, the mother’s behaviour is more salient than what she thinks. If the primary caretaker is adequate in stimulating the infant, is not intrusive (e.g. waiting for the baby’s initiative, stopping stimuli when baby indicates discomfort), and is predictable, a safe learning environment can be created for the infant’s brain.

Ultimately, what we are looking for is raising children who dare explore the world and make it better through their own caring relationships. Therefore, as a society we can’t afford not investing in improving the early caring environment of all children.

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Shaken baby syndrome – recent controversies in Sweden

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It really takes me by surprise, the sheer tone and volume of the debate that has unleashed in Sweden on shaken baby syndrome. The debate basically concerns whether there is such a thing as shaken baby syndrome or not. In a country, where a debate, just as fierce, took place on if putting a child into timeout is a violation of children’s rights, the evidence of the existence of a medical condition due to shaking an infant and thus causing brain damage has been questioned by the Swedish Supreme Court, resulting in several verdicts of acquittal. The American Paediatric Association recommends that we abandon the name shaken baby syndrome and use abusive head trauma instead, to indicate that more than one form of traumatic abuse can cause severe brain damage. Nevertheless, people still use the term shaken baby syndrome and so will I for now. IMG_0002 It is indeed, the mechanism behind the brain injuries that has been questioned. Forensic specialists have argued that biomechanical studies have not been able to substantiate the injury mechanism believed to be causing brain damage in shaken baby syndrome. They argue that haemorrhages present differently in simulation experiments or that neck injuries should be observable for shaking fierce enough to cause brain damage. The problem is that this is a technical discussion, although admittedly vital in court cases when decisions about guilt and intent have to be made. But what I mean by that the discussion is technical is that we know that shaking an infant is really dangerous. So it’s not like we can say – oh look, because we can’t prove that this infant’s injuries are without doubt due to abuse through shaking, and only that, we can now tell parents that it is safe to shake their infants. Because it really is not. My colleagues in other countries barely understand the debate. Among paediatricians this syndrome has long been an accepted and known entity. The way the diagnosis is made is by ruling out every other possible medical or traumatic explanation. Abuse is never the first thing that comes to mind. There is really a rather compelling number and size of population-based studies where abuse by shaking or a combination of shaking and impact have been linked to brain haemorrhage and injury along with retinal bleeding. Symptoms include apnoe or reduced consciousness and these infants often have other injuries, such as rib or long bone fractures. But this is beside the point. Luckily, the Swedish Council on Health Technology Assessment has launched a project on abusive head trauma and will try to figure out the state of the science in the field. My point is that Swedish journalists have been so keen on and so biased in this debate. I think the reason is that journalists were quick to identify with the accused parents. I find this quite unprofessional and believe that journalists should become aware of their own anxieties that are raised by such accusations, instead of letting their defence mechanisms lead them to decide that the parents are right and the system is wrongdoing them. In one of the most popular daily radio news programs, a convicted father, still in jail, was given 7 minutes of prime media time to give his account and state his innocence. He said the infant had several fractured ribs, two long bone fractures, one of which was older, as well as brain haemorrhage. He said he had accidentally jumped back and sat on the infant when it was lying on the sofa, while he was playing with the older sibling. The paediatrician defending the existence of shaken baby syndrome was given much less time and no one questioned the raving implausibility of the infant’s multiple injuries (old and new) in relation to the father’s story. Given the current situation, the guy might even get acquitted. Dropped charges against parents apparently make much better headlines than the realities of a disabled child who survived abusive head trauma. The dead children don’t have a voice either. I worry that this debate is going to result not in protecting innocent parents, but in throwing out abused babies with the bathwater. I hope to be proven wrong.

For now, however, things are not looking good. The public debate has gone so far as to question the very existence of AHT as a diagnosis. So much so that the Swedish Paediatric Association felt obliged to prepare a communiqué to support AHT as a diagnosis and assert that Sweden is no exception when it comes to the occurrence of such cases.

Strange creatures, those researchers

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It must be so much fun, working at a research funding agency.

You can create calls for research money one day and say submissions are due in only a few weeks, and researcher creatures will still apply. If you are in Hungary, you can even tell researchers that the call will only stay open until the sum of money applied for has reached the sum they are looking to distribute (!), and get away with it.

There is all kinds of fun you can have with researcher creatures, who have invested in PhD students and difficult projects that take long time to create results, because they are desperate. You can come up with any criteria and a combination thereof: you may choose to mock around with requirements regarding geography of participants, disciplines, or non-researcher parties that must be involved. You can introduce fun keywords in the call and watch the nerds make hexagons out of themselves trying to fit them.

You also have to have a very dysfunctional website: it should never save any drafts or remember earlier entries. You can make the researcher creatures cut and paste every single post of their CVs; in fact, you can make them manually enter everything they have ever done, written, or lectured about. You can make them translate English titles to non-English ones and the other way around – for no reason at all. And throwing people out at regular intervals is a must, the incidence of which must increase the closer the deadline gets.

And the researcher creatures will still treat you respectfully, keep your deadlines, and be eternally thankful if you award them grants.

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But how have we come to this?

How come that a whole room of highly accomplished researchers only hiss under their breaths when the new call with its ultra-short deadline using a brand new web tool that requires “just a bit of work, first off” is introduced? How come these researchers then spend days, nights, and weekends swearing at the web-tool, but still completing the entries as required and on deadline?

While competition is generally a good thing, forcing researchers to spend a significant proportion of their brain capacity and time on writing grants is a waste of resources. Especially when they need to spend another significant proportion of their time reading other peoples’ grants for peer review…

So what’s the solution?

There does not need to be one, as long as the researcher creature stays up late, gives up social and family activities, and dutifully bends over its computer to fight the Evil Websites of research funding agencies. You would think that smart people who have integrity enough to take on scientific challenges would manage to say no to humiliating processes in the application for research money.

Luckily for the research financing agencies, the researcher creature does not do revolution. Not administrative anyway. So next time you’re looking for a new job and want to have some fun – you know where to go!

The little princess

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As an adolescent I liked Saint-Exupery’s Little prince, but never quite got it. This summer, it suddenly hit me, the meaning of that conversation with the fox in the desert. “But if you tame me, then we shall need each other. To me, you will be unique in all the world. To you, I shall be unique in all the world….”

For a while I just watched her. Then we played more and more and my amazement grew at her resilience, as I got to know this wonderful little person. We did all the things you can do on a warm summer: rode a boat, went swimming, picked berries, and lay in the sun.

Her father still drove like a madman and forgot to feed her on the few days he had her. His house was an unimaginable mess and the neighbours reported drinking parties going on while she was around. Her eczema was not treated and she was left to clean her bottom herself with a resulting rash. Yet, she never complained.

When the number of days left of our holiday could be counted on only one hand, the realisation in me was physical: we now needed each other. To me, she became ‘unique in all the world’, not just a little girl, but my little princess friend. Knowing she would not be safe and happy had become unbearable.

The call to the social services was, thus, no longer optional. She needed me and I was not going to let her down.

Later on, I was surprised to hear that my written report had been read out loud to every single person involved. I didn’t know that was practice and no one had told me. Not that it was a secret, I had told the family I would make that call, because help was needed for both father and child. But I was pretty relieved that I had put so many hours in compiling that report, pointing out the few positives, and strictly defining what was first-hand information and what was not.

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Photo: Fanni Sarkadi

Two weeks later, the longing for her was physical. My little princess, how was she doing? I started writing letters to her, well, not to her now, but to her 16-year-old self. I though that in the midst of her teenage chaos she might want a witness, someone who could give her another version of her story than she might have herself. That it was not her fault, had never been.

I keep writing these letters when the longing for her becomes strong. I tell her I am hanging in there, letting the social services know I am watching from a distance. I also send her postcards and yesterday I posted a sweet little watch with flowers for her. I figured, she might as well get some tools to take command over her life. As long as the social services follow their philosophy that children fare best with their parents, she will have to use her amazing adaptive skills to survive. Before next summer she will know when it is time to leave for preschool or going to bed.

When I stood in the window of that jeweler in Stockholm, I realized another depth of Saint-Exupery’s fox story. To need and to be needed is the secret of truly being alive.

Happy Birthday, blog – some thoughts on research impact

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One year has passed since the day I decided to share my adventures and reflections with my group, while I was on sabbatical. The blog quickly became more than a short-term communication plan with my nearest colleagues.

In the 365 days that have passed, the blog has received 6901 unique views from 70 countries. That gives me plenty more readers than I will ever have for all my scientific articles!

Impact of the research is something that is always discussed when academic promotions are judged. However, by impact, academic institutions mean the Impact factor. This factor denotes the number of citations the articles of a person have received. It says nothing about the actual impact of the work on policy or practice.

One of the roles of academic researchers in Sweden is what is called ‘the third task’. The first two tasks are research and teaching, whereas the third task involves informing and educating the public, indeed to affect policy and practice.

One might think that the third task is one of our most important ones, given that we are financed by public money. However, publishing popular science articles, lecturing to the public, or participating in public debate generates no academic points, whatsoever. In Sweden. So far.

Research Councils UK is much further ahead in defining research impact: ‘the demonstrable contribution that excellent research makes to society and the economy’.

They say that it is not enough just to focus on activities and outputs, such as conferences and scientific publications. You must be able to ‘provide evidence of research impact, for example, that it has been taken up and used by policy makers, and practitioners, has led to improvements in services or business’.

A colleague of mine in Sweden was not promoted to professor based on too low impact – of the traditional kind. Her articles had appeared in journals that published outside the area of cells and did not concern cancer.

It never mattered that her research had changed the practices of midwives nationwide in treating a minority population of women with far higher than average pregnancy-related complications. It never mattered that these complications had significantly decreased thanks to changes in practice propelled by her qualitative studies. I knew she had had an impact when one of the leading politicians in the country told me about my colleague’s research. But hey, her Hirsch-index was too low…

Although I have to play the game of impact factors, I have decided to allow time for pursuing the third task, irrespective of academic points gained. Continuing the blog is, but one way – hopefully to your pleasure.

But this summer I also discovered a new way to create impact, while having great fun: writing a children’s book. Sneaking in effective components from parenting- and couple interventions in the storyline is a possible pathway for impact. Measurable? Maybe.

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Photo: Fanni Sarkadi, Bohuslän

One of the children the book was pilot-tested on asked his mother to buy a bean-bag for a version of the timeout routine described in the book. He thought it sounded like a great idea to chill out a few minutes on a bean-bag when things get out of control. Another group of children started helping a friend who suffered from problems with impulse control by warning him for his signs of “the red rage” they had heard described in the book.

Publishing a book is of course not as easy as hitting the “publish” button here on WordPress. Thank you for reading me. Thank you for the comments, and thank you for spreading the word.

When something is just not right

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Sometimes it takes a while, especially for first-time parents, to realise that something is not right with their child. Often, they do have a gut feeling, but the denial mechanisms that protect us from seeing things we can’t really deal with are extremely strong.

The little boy had lovely curls. I first met him at our house, but my professional eyes cannot be turned off, just because we are having a barbecue party…

At a bit over three, he used single- or two-word sentences, and even those utterances were difficult to understand – not good. He was in constant motion, wandering around the house, and was challenging to occupy with a single activity for more than a very short period of time.

He had difficulty accepting rules, such as not touching my son’s Lego castle, which he ultimately broke into the hundreds of pieces it was carefully crafted from. Ever since, my son screams “oh, no!” every time we mention the little boy’s name.

When the little boy was not happy with something, he lay down on the floor and screamed. As did the little girl on the beach where we were yesterday. I really had to keep myself from staring at that poor mother with her child; the screaming was of a high-pitch, annoying tone and it kept on and on until the child got what she wanted or was forced otherwise. Such as putting on sunscreen. Which made her wail for several minutes, long after the mother was done.

The reason I tried so hard not to look is because of the interview study we had done with parents of children with autism. In their stories, parents told us the countless occasions on which they were stared at in public because of their children’s “meltdowns”.

In Hungary, where public knowledge about developmental disorders is limited, but people’s self-perceived right to interfere with other peoples’ lives isn’t, parents were told innumerable times what ill-disciplined children they had. Even within the family, in-laws or sisters instructed mothers that it was only a matter of proper discipline, and the child would start to behave.

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Of course, by the time of these public meltdowns, parents knew something was wrong. It was all those early signs they could not put together into the notion of some kind of developmental delay.

We also had examples of parents who did know. One of the interviewed mothers in our study said:

We started pushing that we ought to start doing something about the child because he is still not speaking, not a word. (…) Both of them (GP and district nurse) just brushed me off. ‘Boys are slower to think, slower to talk, don’t worry, once he starts talking you’ll have more then enough, it will even give you a headache.’ They tried to reassure me. But I did not settle for that. I took him and checked up on things.

So this mother listened to her intuition. She even got lucky and found adequate services. However, the problem with early childhood services is that they are patchy.

Even in countries, such as Sweden and Australia, with well-established child health surveillance systems and high coverage, kids get lost. It’s not that they don’t attend services. It’s that services do not talk to each other, do not coordinate their efforts, so parents have to.

A solution to this is the so-called ESSENCE approach, developed by Professor Christopher Gillberg. It is to consider Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations as an entity, needing attention. What diagnosis the child will eventually receive is less important. What counts are the child’s and family’s needs here and now.

In the end of August we will visit the only ESSENCE-clinic in Sweden. I thought we could make our own one in Uppsala. A place where parents and clinicians, who feel that something is just not right with a child, could get a proper evaluation and advice. Here and now, before the humiliation of public meltdowns becomes their everyday life.

Resilience

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She is kind of family in a far-fetched way, this little girl I have known since she was one. At that age, she was hanging on her extremely obese mother, crying out loud when she saw new faces. Her life was chaotic with no structure and the social services were already engaged.

At two I got to see a little more of her because she stayed with her grandmother in a house beside our summer house. Still anxious around new people, she spoke only a few words. Nevertheless, once she got used to us, she was happy to participate in family life: played with pots on the floor, slept in her pushchair on our walks, and sat in our knees.

Of course I worried: is it fair to give her all this love and attention for a few weeks and then disappear from her life once again? But I convinced myself that it’s better with as much love and attention as possible, than indifference. Maybe she would store it somewhere and use it when most needed.

By the third summer her life had become even more chaotic: her parents had divorced, she experienced poverty, moves, and moves again. But preschool had done wonders to her development and I was no longer that worried about her cognitive abilities. She was not afraid of us anymore and for many long summer mornings – when her grandmother was not well enough to get out of bed – she was with us. Our children treated her as a little sister. They told her stories, painted her nails, and took her on discovery walks. More love for her to store for worse times.

The beauty of being able to give, what you yourself have gotten, struck me as I watched my children engage with her. I remembered the Hungarian story of the old woman who found a kid (as in baby deer) with a broken leg and took it home to cure it. Her dog and cat befriended the little animal, just as they themselves once had been taken to heart by the old woman.

Those worse times came for the little girl soon after that third summer. Her mother had committed suicide – luckily on the week when she was with her father. Although the little girl didn’t have to find her mother dead she was taken to the morgue to see her. She was prepared by her hand being put to the porcelain sink in the bathroom to show her how cold her mother would feel like.

With no mother and a father with cognitive difficulties I was sure the social services would opt for out-of-home placement. We would then have some big decisions to make. But rather than doing so, massive supports were planned and put into place, albeit pretty half-heartedly. There was also some family back-up, but most of all, the wondrous preschool personnel, who brushed her teeth, treated her eczema, and had extra clean clothes and breakfast prepared for her.

On this fourth summer she recognised us right away. Apparently she told her grandmother that I had missed her and marched right over to our house. She is now here as much as she can. Says yes to everything: water colouring, swimming, even brushing her teeth. She remembers our bicycle adventure from last year and asks to go again and again. She has all her twenty nails painted by my daughters and chatters on all day long.

She eats anything I put in front of her; we bake berry pies, prepare meat balls, and cut fruit sallads. My son is duly jealous of someone taking on the role of the youngest, but is gentle and kind with her and tries to show off his reading skills.

But the one thing she can’t really do is actually to focus when being read to. Already at four she knows Daddy cannot read so well so of course there is no regular reading at bed-time. But wise as she is she knows that learning is valued in our house. So she asks to be taught to write her name and makes me read out loud all the numbers on the jetty, marking the places for the boats. We find her own number there: “4”. She follows it carefully with her finger.

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I watch her with amazement; where does she get it from? This appetite for life, this sucking in of love and whatever good things life pleases to give her. The odds are terrible: early attachment disorder, poverty, parental loss, intellectual disability in her genes, inadequate home environment in her epigenome.

And yet, something tells me she will make it. Her resilience leaves me in awe and makes me wonder if we as a society are not underutilizing children’s ability to overcome challenges in our efforts to keep them happy and safe.

Poor fish!

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The sky was clear blue with no clouds, a light breeze in the air – a perfect day for fishing. We set out for the sea, the boat puffing along the coast. After a while we took out the gear and got ready to catch mackerel.

This you do by trolling: the boat is moving slowly forward while the line with the gleaming troll is deep down in the water. It takes some skill to know when you’ve got fish and then to manage to pull the line on board without losing the fish on the way.

Being a city girl, I really pride myself having learnt the skill. My son seems like a natural and makes me believe we really must have been hunters long ago. His exhilaration of getting the pray seems quite ancient, at least. Even our environmentally aware, anti-meat industry teenager thought this was an ok way to manage dinner.

But not our twelve-year-old daughter. She sat with her back to us as far in the prow she could manage, arms crossed, eyes closed. She felt sorry for the fish. “How would it make you feel if you were out swimming peacefully and some person came and caught you for dinner”, she exclaimed.

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Although her pity for the fish slightly ruined the experience I felt deep appreciation for her ability to feel and express empathy. This human capacity is one of the most important glue keeping societies together.

Just think of how many times you have told your child not to hurt others or take their toys away because they will be sad. Most children are very perceptive to such a comment and soon enough they convey the wisdom to other children around them.

Imagine having a child who does not seem to feel pity or remorse and when punished for the behaviour, seems neither to understand, nor care. Those traits are termed callous-unemotional and are a serious prognostic sign of later antisocial behaviour.

Children with callous-unemotional traits also tend to have more serious conduct problems and have difficulty identifying people’s emotions correctly. They simply do not resonate with other people’s emotions – let alone that of animals.

The very interesting question, of course, is whether such traits are inherent to a child or a product of its environment.

A review of studies on the influence of callous-unemotional traits on the effects of parenting support programs showed that although these children were more difficult to treat, they did respond to positive parenting strategies and stimulant medication, when adequate. However, they do benefit less from parenting interventions and probably need additional training of e.g. emotion recognition.

Most likely, the answer to whether such traits are inherent to a child or a product of its environment is that children with a genetic vulnerability react to harsh parenting and negative social and economic circumstances, like a child with peanut allergy to a Snickers bar: they just cannot cope. So to be able to survive they tune out of instead of into human relationships, and the vicious circle begins.

I am glad that my daughter did not see my husband cut the fish’s heads. She sat there in the sun, spending time with her fantasies, as she often does.

The stories she writes (although miserably spelled), show a young person with a deep understanding of other people’s emotions and reactions. She describes jealousy, betrayal, and remorse in ways that leave me gaping in amazement. Empathy is a treasure I hope she will always keep – even if it sometimes hurts.

Risk or chance?

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For the longest time I was the only one of the five cousins who took care of the procreation of the family. First one, the two, then three kids, and the others still showed no inclination to breed. On the contrary, my brother said it was the perfect contraceptive to take care of my kids – especially all three at once!

Finally, however, I found myself sitting between no less than two pregnant cousins at the latest family gathering in Budapest, and with a two-year-old looking at me with her father’s eyes from across the table. One of the cousins had just gone through the latest among prenatal diagnostic inventions: analysis of fetal chromosomes from maternal blood. No invasive diagnostics involved, just a simple blood test.

Although this method is still a novelty that only a few labs in the world do (and my cousin had to pay loads of money for it), it shows the speed and direction of where we are heading in terms of prenatal diagnostics. In the Netherlands, a new program of preconception diagnostics had been initiated – before couples even start considering a pregnancy they can find out about their risks for having babies with recessive genetic disorders.

The notion of risk, however, the risk of the fetus having some kind of anomaly, is very difficult for expectant couples to digest. Given this ultrasound marker you have a 1:200 risk of having a child with Downs syndrome. What?! What does that even mean?

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This baby is fine. Most of them are!

In our studies with expectant mothers and fathers we found that both parents were deeply shocked and frustrated by findings on the routine ultrasound that lead to risk estimations they did not expect or ask for. In addition, we found that after receiving a risk figure due to a marker found at the routine ultrasound, couples opted for invasive diagnostics 24 times more often than couples without such markers. The problem with invasive tests, such as amniocentesis, is of course the risk for pregnancy loss, but it also involves considerable costs.

Tomorrow my PhD student Annika Åhman is going to defend her thesis Pregnancy Ultrasound Detecting Soft Markers – the Challenge of Communicating Risk Figures. Apart from her being my student it is actually a very good thesis on an important subject.

Is having a healthy baby a risk or a chance? Why do we talk about a risk of 1 in 200, when there is a chance that 199 babies of 200 do not have a chromosome anomaly? How can we make sure that taking part in any kind of fetal diagnostics, such as the routine ultrasound visit, is based on an informed choice? As long as expectant parents think it’s a nice social event to have a peek at the baby and even get a picture of it, we will have to deal with parents being shocked by unexpected risk estimations.

My cousin, of course, clearly knew what she was doing when she requested the test – a leading researcher in her field of microtubules, she would know that cells sometimes misbehave and chromosomes get stuck where they shouldn’t. But her baby has just the right number of chromosomes and will be continuing the row of strong women in the family with her XXs in place. Chances are, she’ll be just fine. And the risks? Well, there is a risk of rain on her birthdays – she will live in England after all!