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Parental Experiences and Needs After Life-Limiting Fetal Diagnosis

  • Amy Kuebelbeck
  • Erin M. Denney-Koelsch
Chapter
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Abstract

After receiving a life-limiting prenatal diagnosis, parents typically experience a swirl of emotions and need to make significant decisions about the remainder of the pregnancy and about their baby’s care after birth. Many parents find purpose in parenting their baby before as well as after birth, imbuing their baby’s life with meaning and creating memories to sustain them later. Parents generally need significant support from health professionals and others with understanding the diagnosis and prognosis, to learn what treatment options there are and the implications of these choices, and to provide direct patient and family-centered care. Resources are gradually becoming more widely available for supporting parents continuing their pregnancies with a life-limiting prenatal diagnosis.

Keywords

Perinatal palliative care Perinatal hospice Decision-making 

References

  1. 1.
    Kuebelbeck A. Waiting with Gabriel: a story of cherishing a baby’s brief life. Chicago: Loyola Press; 2003.Google Scholar
  2. 2.
    Kuebelbeck A, Davis DL. A gift of time: continuing your pregnancy when your baby’s life is expected to be brief. Baltimore: Johns Hopkins University Press; 2011. 408 p.Google Scholar
  3. 3.
    Côté-Arsenault D, Denney-Koelsch E. “Have no regrets”: parents’ experiences and developmental tasks in pregnancy with a lethal fetal diagnosis. Soc Sci Med. 2016;154:100–9.CrossRefGoogle Scholar
  4. 4.
    Denney-Koelsch EM, Côté-Arsenault D, Lemcke-Berno E. Parents’ experiences with ultrasound during pregnancy with a lethal fetal diagnosis. Glob Qual Nurs Res. 2015;2:2333393615587888.PubMedPubMedCentralGoogle Scholar
  5. 5.
    The Compassionate Friends, NFO Research Inc. When a child dies: a survey of bereaved parents [Internet]. 1999. Available from: https://docplayer.net/21487803-When-a-child-dies-a-survey-of-bereaved-parents-conducted-by-nfo-research-inc-on-behalf-of-the-compassionate-friends-inc.html.
  6. 6.
    The Compassionate Friends. Only 16 percent of bereaved parents divorce, new study reveals [Internet]. 2006. Available from: www.compassionatefriends.org/CMSFiles/X101206Press_Release_Survey,_Divorce-National.pdf.
  7. 7.
    Gold KJ, Sen A, Hayward RA. Marriage and cohabitation outcomes after pregnancy loss. Pediatrics. 2010;125(4):1202–7.CrossRefGoogle Scholar
  8. 8.
    Côté-Arsenault D, Denney-Koelsch E. Love is a choice: couple responses to continuing pregnancy with a lethal fetal diagnosis. Illn Cris Loss. 2018;26(1):5–22.CrossRefGoogle Scholar
  9. 9.
    Avelin P, Erlandsson K, Hildingsson I, Bremborg AD, Rådestad I. Make the stillborn baby and the loss real for the siblings: parents’ advice on how the siblings of a stillborn baby can be supported. J Perinat Educ. 2012;21(2):90–8.CrossRefGoogle Scholar
  10. 10.
    O’Leary J, Warland J, Parker L. Bereaved parents’ perception of the grandparents’ reactions to perinatal loss and the pregnancy that follows. J Fam Nurs. 2011;17(3):330–56.CrossRefGoogle Scholar
  11. 11.
    Côté-Arsenault D, Denney-Koelsch E. “My baby is a person”: parents’ experiences with life-threatening fetal diagnosis. J Palliat Med. 2011;14(12):1302–8.CrossRefGoogle Scholar
  12. 12.
    Denney-Koelsch E, Côté-Arsenault D, Jenkins Hall W. Feeling cared for versus experiencing added burden: parents’ needs from health care providers in pregnancy with a lethal fetal diagnosis. Illness, Cris Loss [Internet]. 2016:293–315. Available from:  https://doi.org/10.1177/1054137316665817.CrossRefGoogle Scholar
  13. 13.
    Sandelowski M, Barroso J. The travesty of choosing after positive prenatal diagnosis. JOGNN – J Obstet Gynecol Neonatal Nurs. 2005;34(3):307–18.CrossRefGoogle Scholar
  14. 14.
    Wool C, Limbo R, Denney-Koelsch EM. “I would do it all over again”: cherishing time and the absence of regret in continuing a pregnancy after a life-limiting diagnosis. J Clin Ethics. 2018;29(3):227–36.PubMedGoogle Scholar
  15. 15.
    Caring Bridge [Internet]. Available from: www.caringbridge.org.
  16. 16.
    When your baby dies: information and resources for bereaved parents about the option to bring your stillborn or deceased baby home.Google Scholar
  17. 17.
    Limbo R, Lathrop A. Caregiving in mothers’ narratives of perinatal hospice. Illn Cris Loss. 2014;22(1):43–65.CrossRefGoogle Scholar
  18. 18.
    Kobler K, Limbo R, Kavanaugh K. Meaningful moments: the use of ritual in perinatal and pediatric death. MCN Am J Matern Nurs. 2007;32(5):288–95.CrossRefGoogle Scholar
  19. 19.
    Limbo R. Caring for families experiencing stillbirth: a unified position statement on contact with the baby. Illn Cris Loss. 2012;20(3):295–8.CrossRefGoogle Scholar
  20. 20.
    Leon IG. Helping families cope with perinatal loss. Glob Libr Women’s Med [Internet]. 2008. Available from:  https://doi.org/10.3843/GLOWM.10418.
  21. 21.
    Côté-Arsenault D. Weaving babies lost in pregnancy into the fabric of the family. J Fam Nurs. 2003;9(1):23–37.CrossRefGoogle Scholar
  22. 22.
    Limbo R, Kobler K. The tie that binds: relationships in perinatal bereavement. MCN Am J Matern Nurs. 2010;35(6):316–21.Google Scholar
  23. 23.
    Wool C, Repke JT, Woods AB. Parent reported outcomes of quality care and satisfaction in the context of a life-limiting fetal diagnosis. J Matern Neonatal Med. 2017;30(8):894–9.CrossRefGoogle Scholar
  24. 24.
    Resolve Through Sharing Bereavement Education [Internet]. Available from: http://www.gundersenhealth.org/resolve-through-sharing/.
  25. 25.
    Share Pregnancy & Infant Loss Support [Internet]. Available from: http://nationalshare.org.
  26. 26.
    Waiting with love [Internet]. Available from: http://www.erichad.com/wwl.
  27. 27.
    Tioleco-Cheng M. Special delivery. Rise-and-Shine Studio; 2013.Google Scholar
  28. 28.
    Murkoff H, Mazel S. If a problem is found. In: What to expect when you’re expecting. 5th ed. New York City: Workman Publishing Company; 2016. p. 60–1.Google Scholar
  29. 29.
    Trisomy 18 Foundation [Internet]. Available from: www.trisomy18.org.
  30. 30.
    Anencephaly.info [Internet]. Available from: www.anencephaly.info.
  31. 31.
    Anencephaly.info Facebook group [Internet]. Available from: www.facebook.com/groups/anencephaly.info.
  32. 32.
    Trisomy 18 Foundation. Expecting Trisomy 18 Facebook group [Internet]. Available from: www.facebook.com/groups/ExpectingTrisomy18.
  33. 33.
    HLHS Comfort Care, private Facebook group for parents of babies with hypoplastic left heart syndrome [Internet]. Available from: www.facebook.com/groups/1597312227239884.
  34. 34.
    BabyCenter. Carrying/carried pregnancy despite poor or fatal prenatal diagnosis message board [Internet]. Available from: https://community.babycenter.com/groups/a6711405/carrying_pregnancy_to_term_despite_fatal_prenatal_diagnosis.
  35. 35.
    Kuebelbeck A. Resources for parents, perinatalhospice.org [Internet]. Available from: www.perinatalhospice.org/resources-for-parents.

Copyright information

© Springer Nature Switzerland AG 2020

Authors and Affiliations

  • Amy Kuebelbeck
    • 1
  • Erin M. Denney-Koelsch
    • 2
  1. 1.Editor, perinatalhospice.orgSt. PaulUSA
  2. 2.University of Rochester Medical Center/Strong Memorial Hospital, Department of Medicine, Division of Palliative CareRochesterUSA

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