Fatima was a happy child who loved school and was a top student. She was 11 years old when she took to her bed, stopped eating and drinking, covered her head with the sheet, stopped washing and started wetting the bed. For months she would not or could not get out of bed and had to be carried to the toilet. She would not speak to her parents or friends. After over 5 years on Nauru, almost half her life, she had lost control of her destiny, had lost all hope and had lost the will to live. When she was transferred to Australia with her mother she needed tube-feeding for a week to maintain hydration and needed walking aid for two months to move around. She gradually began to eat, drink, wash and toilet herself and to socialise. She remained a hospital inpatient for two months and is expected to need several more months of outpatient treatment.
Pervasive refusal syndrome is a rare psychiatric condition affecting mainly children aged 7 to 15 years old, girls three times as often as boys, although the youngest affected child described is 4 years old.1 The term pervasive refusal was first used by a British child psychiatrist Bryan Lask and colleagues to describe four girls aged between 9 and 15 with profound and pervasive refusal to eat, drink, walk, talk or care for themselves over a period of several months.2 Sydney clinicians proposed widely accepted diagnostic criteria (Table 1).3 The condition shares features with but differs from other psychiatric conditions including depression, anxiety, catatonia, selective mutism and chronic fatigue. Pervasive refusal syndrome is different from anorexia nervosa, where children are delusional about their weight, but both conditions are potentially life-threatening. Death can result from metabolic derangement due to chronic malnutrition and due to re-feeding syndrome.4,5 Re-feeding syndrome, which was first described in prisoners of war after World War II, can cause a potentially fatal shift in fluids and electrolytes with either enteral or parenteral re-feeding and can cause encephalopathy and cardiac arrest.4,5
|Table 1: Diagnostic criteria for pervasive refusal syndrome
The causes of pervasive refusal syndrome are complex and multifactorial. Although sexual abuse seemed a possible cause in the early cases,2 it has been less likely in most subsequent cases.1,3 Nunn and Thompson see pervasive refusal syndrome as a response to events perceived as uncontrollable, for example loss of loved ones, any form of abuse, severe parental conflict, migration or frequent move of home and/or school.3
The condition became highly politicised in Sweden when over 400 children seeking asylum who had escaped from appalling trauma in their countries of origin developed symptoms similar to pervasive refusal syndrome.6-8 They were living in the community caught in a policy quagmire of administrative paralysis leading to prolonged uncertainty about their refugee status and their future.8 Clinicians debated the overlap and differences between what they termed ‘depressive devitalisation’ and post-traumatic stress disorder.6-8 Eriksson questioned whether the condition was genuine and proposed the parents were malingering.9 Eriksson’s theory had great traction with a government desperate to blame the victims.8
Treatment involves correcting the cause, re-feeding and psychological treatment for months, sometimes over a year.1,8 The first rule of trauma therapy is to remove the child from any ongoing trauma to a place of safety. In the case of children on Nauru, this means transferring them to the mainland for treatment, together with their family. It is well accepted in child protection that it is impossible to treat children who are being abused effectively if the abuse is allowed to continue. The corollary is that it is not possible to treat children on Nauru with pervasive refusal syndrome if they remain on Nauru.
IHMS and the governments of Australia and Nauru resist transfer of children with pervasive refusal syndrome. They blame the children and their parents for not feeding them and they blame advocacy groups for coaching the children. They oppose lawyers seeking court orders for transfer, although sometimes concede just before the case comes to court. They blame the children for malingering and their parents for not feeding them and they blame advocacy groups for coaching the children. This politically motivated stance ignores the plight of seriously ill children. The children will not recover on Nauru and will inevitably have to be transferred to Australia eventually, so delaying transfer only increases the risk to the child of serious harm. So far no child has died from pervasive refusal syndrome but children with anorexia nervosa have died from re-feeding syndrome5 and the emergency treatment being given to children in extremis on Nauru contravenes current recommendations.4,5 Delaying transfer increases the risk of dying, and may exacerbate long-term psychological sequelae.
Currently we know of 12 children who have been transferred from Nauru to Australia with pervasive refusal syndrome in 2018, and we know of approximately 18 children currently on Nauru who fulfil the diagnostic criteria for pervasive refusal syndrome.
As of 26th Feb 2018, there were 158 children still on Nauru.9 Nine nuclear families were split between Australia and Manus or Nauru.9 All the families on Nauru have been there over 5 years. Many have been denied US visas and told they will never come to Australia and will not be allowed to accept New Zealand’s offer of resettlement. If the Australian government does not have a change of heart and get all #KidsOffNauru, we will have to rescue many more children with pervasive refusal syndrome.
Fatima (not her real name) and her parents agreed courageously to allow me to tell her story. Courageous because many families are scared that if they tell their stories they will be less likely to be granted refugee status and may be returned to Nauru. There are many heroes trying to help children like Fatima, too many to mention by name. They have my heartfelt admiration.
David Isaacs, Children’s Hospital at Westmead (firstname.lastname@example.org)
- Lask B. Pervasive refusal syndrome. Adv. Psychiatr.Treatmen. The Royal College of Psychiatrists. 2004;10:153–9.
- Lask B, Britten C, Kroll L, Magagna J, Tranter M. Children with pervasive refusal. Arch. Dis. Child. 1991;66:866-9.
- Thompson S, Nunn K. The pervasive refusal syndrome: The Royal Alexandra Hospital for Children experience. Clin. Child Psychol. Psychiatry 1997;2:145-65.
- Mehanna HM. Moledina J, Travis J. Refeeding syndrome: what it is, and how to prevent and treat it. BMJ. 2008;336:1495.
- Bodegard G. Life-threatening loss of function in refugee children: another expression of pervasive refusal syndrome? Clin. Child Psychol. Psychiatry 2005;10:337-50.
- von Folsach LL. Montgomery E. Pervasive refusal syndrome among asylum-seeking children. Clin. Child Psychol. Psychiatry 2006;11:457-73.
- Nunn KP, Lask B, Owen I. Pervasive refusal syndrome (PRS) 21 years on: a re-conceptualisation and a remaining. Eur. Child Adolesc. Psychiatry 2014;23163-72..
- Eriksson. Debate and letters. Läkartidiningen 2006;103:856-7.
- Kohn MR, Golden NH, Shenker IR. Cardiac arrest and delirium: presentations of the refeeding syndrome in severely malnourished adolescents with anorexia nervosa. J. Adolesc. Health. 1998;22:239-43.
- Refugee Council of Australia. Operation Sovereign Borders and offshore processing statistics. August 3rd 2018. Link: https://www.refugeecouncil.org.au/getfacts/operation-sovereign-borders-offshore-detention-statistics/ (accessed 1/10/18).