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If the Unthinkable Happens: Families After SUID

  • Richard D. GoldsteinEmail author
Chapter
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Abstract

Clinicians, public health professionals, and others involved in the care of an infant and family after SUID can feel ill prepared to offer support and guidance in the aftermath of this tragic loss. This chapter focuses on family experiences, likely responses, available resources, and the clinician’s role following SUID. Infants die from SUID both with and without risk factors, and they often have predictable questions. Coping after SUID is an isolating and extremely difficult experience for parents. Most of their relationships are tested. Rates of Prolonged Grief Disorder are extremely high when compared to other kinship groups. Concrete contributions include guiding the family through the forensic system and advocating for their need to find answers. The family will be helped by counseling about grief and anticipating solutions to social complexities. In any interaction, assessing their coping, saying their child’s name, and letting them tell their story will have therapeutic value.

Keywords

SIDS Sudden unexpected death in pediatrics Parents Death scene investigation Undiagnosed diseases Grief Self-blame Coping 

References

  1. 1.
    Garstang J, Griffiths F, Sidebotham P. What do bereaved parents want from professionals after the sudden death of their child: a systematic review of the literature. BMC Pediatr. 2014;14:269. PMCID: PMC4287432. Epub 2014/10/15.Google Scholar
  2. 2.
    Camperlengo L, Shapiro-Mendoza CK, Gibbs F. Improving sudden unexplained infant death investigation practices: an evaluation of the Centers for Disease Control and Prevention’s SUID Investigation Training Academies. Am J Forensic Med Pathol. 2014;35(4):278–82.Google Scholar
  3. 3.
    Fleming PJ, Blair PS, Sidebotham PD, Hayler T. Investigating sudden unexpected deaths in infancy and childhood and caring for bereaved families: an integrated multiagency approach. BMJ. 2004;328(7435):331–4. PMCID: PMC338105.Google Scholar
  4. 4.
    Mitchell RA, DiAngelo C, Morgan D. Medicolegal Death Investigation of sudden unexpected infant deaths. Pediatr Ann. 2017;46(8):e297–e302.Google Scholar
  5. 5.
    Erck Lambert AB, Parks SE, Camperlengo L, Cottengim C, Anderson RL, Covington TM, et al. Death Scene Investigation and autopsy practices in sudden unexpected infant deaths. J Pediatr. 2016;174:84–90.e1. PMCID: PMC5063238. Epub 2016/04/22.Google Scholar
  6. 6.
    Petrikin JE, Willig LK, Smith LD, Kingsmore SF. Rapid whole genome sequencing and precision neonatology. Seminars in perinatology. 2015;39(8):623–31. PMCID: PMC4657860. Epub 2015/11/02.Google Scholar
  7. 7.
    The National Association of Medical Examiners. NAME Inspection and Accreditation Checklist. 2018. p. 23.Google Scholar
  8. 8.
    Goldstein RD, Nields HM, Kinney HC. A New approach to the investigation of sudden unexpected death. Pediatrics. 2017;140(2):e20170024.Google Scholar
  9. 9.
    Martin K. When a baby dies of SIDS: the parents’ grief and search for reason. New York: Routledge; 2016.Google Scholar
  10. 10.
    Filiano JJ, Kinney HC. A perspective on neuropathologic findings in victims of the sudden infant death syndrome: the triple-risk model. Biol Neonate. 1994;65(3–4):194–7.CrossRefGoogle Scholar
  11. 11.
    Moon RY, Task Force On Sudden Infant Death S. SIDS and other sleep-related infant deaths: evidence base for 2016 updated recommendations for a safe infant sleeping environment. Pediatrics. 2016;138(5):e20162940.Google Scholar
  12. 12.
    Kinney HC, Thach BT. The sudden infant death syndrome. N Engl J Med. 2009;361(8):795–805. PMCID: 3268262.Google Scholar
  13. 13.
    Kinney HC, Richerson GB, Dymecki SM, Darnall RA, Nattie EE. The brainstem and serotonin in the sudden infant death syndrome. Ann Rev Pathol. 2009;4:517–50. PMCID: 3268259.Google Scholar
  14. 14.
    Cummings KJ, Commons KG, Hewitt JC, Daubenspeck JA, Li A, Kinney HC, et al. Failed heart rate recovery at a critical age in 5-HT-deficient mice exposed to episodic anoxia: implications for SIDS. J Appl Physiol. 2011;111(3):825–33. PMCID: 3174796.Google Scholar
  15. 15.
    Cummings KJ, Hewitt JC, Li A, Daubenspeck JA, Nattie EE. Postnatal loss of brainstem serotonin neurones compromises the ability of neonatal rats to survive episodic severe hypoxia. J Physiol. 2011;589(Pt 21):5247–56. PMCID: 3225677.Google Scholar
  16. 16.
    Dosumu-Johnson RT, Cocoran AE, Chang Y, Nattie E, Dymecki SM. Acute perturbation of Pet1-neuron activity in neonatal mice impairs cardiorespiratory homeostatic recovery. eLife. 2018;7. PMCID: PMC6199134. Epub 2018/10/24.Google Scholar
  17. 17.
    Kinney HC, Cryan JB, Haynes RL, Paterson DS, Haas EA, Mena OJ, et al. Dentate gyrus abnormalities in sudden unexplained death in infants: morphological marker of underlying brain vulnerability. Acta Neuropathol. 2015;129(1):65–80. PMCID: 4282685.Google Scholar
  18. 18.
    Tester DJ, Wong LCH, Chanana P, Jaye A, Evans JM, FitzPatrick DR, et al. Cardiac genetic predisposition in sudden infant death syndrome. J Am Coll Cardiol. 2018;71(11):1217–27.CrossRefGoogle Scholar
  19. 19.
    Morris S, Fletcher K, Goldstein R. The grief of parents after the death of a young child. J Clin Psychol Med Settings. 2018;26(3):321–38. Epub 2018/11/30CrossRefGoogle Scholar
  20. 20.
    Moon RY, Patel KM, Shaefer SJ. Sudden infant death syndrome in child care settings. Pediatrics. 2000;106(2 Pt 1):295–300.Google Scholar
  21. 21.
    Mitchell EA, Thach BT, Thompson JM, Williams S. Changing infants’ sleep position increases risk of sudden infant death syndrome. New Zealand Cot Death Study. Arch Pediatr Adolesc Med. 1999;153(11):1136–41. Epub 1999/11/11CrossRefGoogle Scholar
  22. 22.
    Cote A, Gerez T, Brouillette RT, Laplante S. Circumstances leading to a change to prone sleeping in sudden infant death syndrome victims. Pediatrics. 2000;106(6):E86. Epub 2000/01/11CrossRefGoogle Scholar
  23. 23.
    Juth V, Smyth JM, Carey MP, Lepore SJ. Social constraints are associated with negative psychological and physical adjustment in bereavement. Appl Psychol Health Well Being. 2015;7(2):129–48. Epub 2015/02/24Google Scholar
  24. 24.
    Lepore SJ, Silver RC, Wortman CB, Wayment HA. Social constraints, intrusive thoughts, and depressive symptoms among bereaved mothers. J Pers Soc Psychol. 1996;70(2):271–82.Google Scholar
  25. 25.
    Goldstein RD. Unpublished data from NIH ancillary study, Maternal Grief in High Risk Settings. 2016.Google Scholar
  26. 26.
    Stroebe M, Stroebe W, van de Schoot R, Schut H, Abakoumkin G, Li J. Guilt in bereavement: the role of self-blame and regret in coping with loss. PloS One. 2014;9(5):e96606. PMCID: PMC4018291. Epub 2014/05/14.Google Scholar
  27. 27.
    Erev I, Glozman I, Hertwig R. What impacts the impact of rare events. J Risk Uncertain. 2008;36(2):153–77.CrossRefGoogle Scholar
  28. 28.
    Hunt CE. Sudden infant death syndrome and other causes of infant mortality: diagnosis, mechanisms, and risk for recurrence in siblings. Am J Respir Crit Care Med. 2001;164(3):346–57.Google Scholar
  29. 29.
    Christensen ED, Berger J, Alashari MM, Coon H, Robison C, Ho HT, et al. Sudden infant death “syndrome”-insights and future directions from a Utah population database analysis. Am J Med Genet A. 2017;173(1):177–82. Epub 2016/10/30CrossRefGoogle Scholar
  30. 30.
    Warland J, O’Leary J, McCutcheon H, Williamson V. Parenting paradox: parenting after infant loss. Midwifery. 2011;27(5):e163–9.Google Scholar
  31. 31.
    Morris S, Fletcher K, Goldstein R. The grief of parents after the death of a young child. J Clin Psychol Med Settings. 2019;26(3):321–38. Epub 2018/11/30CrossRefGoogle Scholar
  32. 32.
    Bowlby J. Attachment and loss: retrospect and prospect. Am J Orthopsychiatry. 1982;52(4):664–78. Epub 1982/10/01CrossRefGoogle Scholar
  33. 33.
    Prigerson HG, Horowitz MJ, Jacobs SC, Parkes CM, Aslan M, Goodkin K, et al. Prolonged grief disorder: psychometric validation of criteria proposed for DSM-V and ICD-11. PLoS Med. 2009;6(8):e1000121. PMCID: PMC2711304.Google Scholar
  34. 34.
    Goldstein RD, Lederman RI, Lichtenthal WG, Morris SE, Human M, Elliott AJ, et al. The grief of mothers after the sudden unexpected death of their infants. Pediatrics. 2018;141(5):e20173651.Google Scholar
  35. 35.
    Dyregrov A, Dyregrov K. Long-term impact of sudden infant death: a 12- to 15-year follow-up. Death Stud. 1999;23(7):635–61.CrossRefGoogle Scholar
  36. 36.
    Goldstein RD, Petty CR, Morris SE, Human M, Odendaal H, Elliott A, et al. Pre-loss personal factors and prolonged grief disorder in bereaved mothers. Psychol Med. 2018;9:1–9. Epub 2018/11/10Google Scholar
  37. 37.
    Hofer MA. Relationships as regulators: a psychobiologic perspective on bereavement. Psychosom Med. 1984;46(3):183–97.CrossRefGoogle Scholar
  38. 38.
    Stroebe M, Finkenauer C, Wijngaards-de Meij L, Schut H, van den Bout J, Stroebe W. Partner-oriented self-regulation among bereaved parents: the costs of holding in grief for the partner’s sake. Psychol Sci. 2013;24(4):395–402.CrossRefGoogle Scholar
  39. 39.
    Wijngaards-de Meij L, Stroebe M, Schut H, Stroebe W, van den Bout J, van der Heijden PG, et al. Parents grieving the loss of their child: interdependence in coping. Br J Clin Psychol. 2008;47(Pt 1):31–42.CrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2020

Authors and Affiliations

  1. 1.Robert’s Program on Sudden Unexpected Death in Pediatrics, Division of General Pediatrics, Department of PediatricsBoston Children’s Hospital and Harvard Medical SchoolBostonUSA

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