Unresponsive Wakefulness Syndrome in Children after Near-Drowning: Long-Term Outcome and Impact on the Families

Abstract

Among 131 children admitted to our institution for early phase rehabilitation after freshwater near-drowning (ND) between the year 1986 and 2000, 87 were in unresponsive wakefulness syndrome (UWS) for at least 4 weeks after the accidents. An anonymous questionnaire was sent to the families after 0.5 to 15.0 years (median: 4.6) and 48 mothers and 51 fathers of 55 of these 87 children were interviewed after 6.6 to 23.8 years (median: 13.8) of ND. At the time of the interviews, 8/55 children were able to perform daily living activities independently, 36/55 children were not able to do so (many of them suffered from chronic medical conditions like spasticity or disorders of swallowing), and 11/55 children had died. Health-related quality of life (HRQoL) was, however, similar to the normal population for mothers, and even higher for fathers. Furthermore, the ND accident had apparently not lead to a higher rate of separations of parents but had increased their likelihood to have further children. Feelings of guilt were highly prevalent (23/47 mothers, 20/47 fathers), and correlated with lower HRQoL of the respective parent. We found correlations between duty of supervision and feelings of guilt and between outcome and HRQoL for only the fathers. In conclusion, we found that after 4 weeks in UWS, the long-term neurological outcome of pediatric ND victims is often but not always poor. Despite often severe disabilities or death of the child during long-term care, parents surprisingly report little impact on their HRQoL, on the stability of their partnership or on their wish to have further children. Our findings may help parents and physicians to choose the best treatment for a child in UWS due to different etiologies striking the balance between rehabilitation and palliative care.

Keywords

persistent vegetative state - children - near-drowning - health-related quality of life - long-term outcome - unresponsive wakefulness syndrome

• References

• 1 Nixon J, Pearn J. Emotional sequelae of parents and sibs following the drowning or near-drowning of a child. Aust N Z J Psychiatry 1977; 11 (04) 265-268
• 2 Suominen PK, Vähätalo R. Neurologic long term outcome after drowning in children. Scand J Trauma Resusc Emerg Med 2012; 20: 55
• 3 Bell TS, Ellenberg L, McComb JG. Neuropsychological outcome after severe pediatric near-drowning. Neurosurgery 1985; 17 (04) 604-608
• 4 Bratton SL, Jardine DS, Morray JP. Serial neurologic examinations after near drowning and outcome. Arch Pediatr Adolesc Med 1994; 148 (02) 167-170
• 5 Hughes SK, Nilsson DE, Boyer RS. , et al. Neurodevelopmental outcome for extended cold water drowning: a longitudinal case study. J Int Neuropsychol Soc 2002; 8 (04) 588-595
• 6 Kieboom JK, Verkade HJ, Burgerhof JG. , et al. Outcome after resuscitation beyond 30 minutes in drowned children with cardiac arrest and hypothermia: Dutch nationwide retrospective cohort study. BMJ 2015; 350 :h 418 10.1136/bmj.h418
• 7 Kruus S, Bergström L, Suutarinen T, Hyvönen R. The prognosis of near-drowned children. Acta Paediatr Scand 1979; 68 (03) 315-322
• 8 Pearn J. Neurological and phychometric studies in children surviving freshwater immersion accidents. Lancet 1977; 1 (8001): 7-9
• 9 Suominen PK, Korpela RE, Silfvast TG, Olkkola KT. Does water temperature affect outcome of nearly drowned children. Resuscitation 1997; 35 (02) 111-115
• 10 Suominen PK, Vähätalo R, Sintonen H, Haverinen A, Roine RP. Health-related quality of life after a drowning incident as a child. Resuscitation 2011; 82 (10) 1318-1322
• 11 Suominen PK, Vallila NH, Hartikainen LM, Sairanen HI, Korpela RE. Outcome of drowned hypothermic children with cardiac arrest treated with cardiopulmonary bypass. Acta Anaesthesiol Scand 2010; 54 (10) 1276-1281
• 12 Multi-Society Task Force on PVS. Medical aspects of the persistent vegetative state (1). N Engl J Med 1994; a; 330 (21) 1499-1508
• 13 Multi-Society Task Force on PVS. Medical aspects of the persistent vegetative state (2). N Engl J Med 1994; b; 330 (22) 1572-1579
• 14 Heindl UT, Laub MC. Outcome of persistent vegetative state following hypoxic or traumatic brain injury in children and adolescents. Neuropediatrics 1996; 27 (02) 94-100
• 15 Giovannetti AM, Pagani M, Sattin D. , et al. Children in vegetative state and minimally conscious state: patients' condition and caregivers' burden. ScientificWorldJournal 2012; 2012: 232149 Doi: 10.1100/2012/232149
• 16 Giacino JT, Katz DI, Schiff ND. , et al. Comprehensive systematic review update summary: disorders of consciousness: report of the guideline development, dissemination, and implementation subcommittee of the American Academy of Neurology; the American Congress of Rehabilitation Medicine; and the National Institute on Disability, independent living, and rehabilitation research. Arch Phys Med Rehabil 2018; 99 (09) 1710-1719
• 17 Kluger G, Romein E, Hessenauer M, Pringsheim M, Berweck S. Pediatric Klüver-Bucy syndrome: report of two cases and review of the literature. Neuropediatrics 2018; 49 (05) 353-354
• 18 Kaplan EL, Meier P. Nonparametric estimation from incomplete observations. J Am Stat Assoc 1958; 53 (282) 457-481
• 19 Sachdeva RC. Near drowning. Crit Care Clin 1999; 15 (02) 281-296
• 20 Waugh JH, O'Callaghan MJ, Pitt WR. Prognostic factors and long-term outcomes for children who have nearly drowned. Med J Aust 1994; 161 (10) 594-595 , 598–599
• 21 Howell K, Grill E, Klein AM, Straube A, Bender A. Rehabilitation outcome of anoxic-ischaemic encephalopathy survivors with prolonged disorders of consciousness. Resuscitation 2013; 84 (10) 1409-1415
• 22 Kurz R. ; Ethics working group of Confederation of the European Specialists of Paediatrics. Decision making in extreme situations involving children: withholding or withdrawal of life supporting treatment in paediatric care. Statement of the ethics working group of the Confederation of the European Specialists of Paediatrics (CESP). Eur J Pediatr 2001; 160 (04) 214-216