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Perinatal Bereavement Care

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Perinatal Palliative Care

Abstract

For most people, following the death of a loved one, meaning is made in the context of a long, fulfilled life. One exception to this is the instance of perinatal loss, which can be an inconceivable experience, where loved ones and professionals alike may have trouble making sense of “why this happened.” In this unthinkably painful and complex experience, many parents grieve deeply throughout their lifetime. The shockwaves from this death can impact the mourning process and worldview of multiple generations within a family. Social supports often incorrectly assume that the grief will be proportional to the length of their time with the fetus or baby. However, through quality bereavement care, a parent’s sense of self can be restructured with a potential for positive growth after the loss. Care providers have an opportunity to provide education and support to families in need. This chapter aims to address the multifaceted nature of the grieving process, common grief theories, how they apply to the perinatal population, and a suggested approach to working with families. It will explore the resilient capabilities of three bereaved families to provide insights on how clinicians can care for those who have experienced a perinatal loss.

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Author information

Authors and Affiliations

  1. Department of Pediatric Palliative Care, Golisano Children’s Hospital, University of Rochester Medical Center, Rochester, NY, USA

    Ashley Pinkeney

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  1. Ashley Pinkeney
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Correspondence to Ashley Pinkeney .

Editor information

Editors and Affiliations

  1. Strong Memorial Hospital, University of Rochester, Rochester, NY, USA

    Erin M. Denney-Koelsch

  2. School of Nursing, Saint Louis University, Saint Louis, MO, USA

    Denise Côté-Arsenault

Appendix 1 Bereavement Resources for Families and Providers

Appendix 1 Bereavement Resources for Families and Providers

Bereavement

1. www.bereavedparentsusa.org.,

National support organization with many resource links [34]

2. https://www.babysbreathcanada.ca/

Baby’s breath is Canada’s only national foundation focused on SIDS, and more recently also dedicated to reducing all sudden and unexpected infant deaths including stillbirths [35]

3. www.bereavementmag.com,

Resource for magazines, (including living with loss magazine—An online magazine), books, cards, gifts, memorials, and music [36].

4. www.compassionatefriends.org

Self-help organization for bereaved families [37].

5. https://www.centerforloss.com/

Led by grief counselor and educator Dr. Alan Wolfelt, we are an organization dedicated to helping people who are grieving and those who care for them [38]

6. https://centering.org/

A non-profit organization and retailer providing education and resources for the bereaved and providers [39]

7. http://www.erichad.com/index.html,

EriChad describes their work this way: “Grieving the loss of a child is one of life’s most difficult experiences. You may think you’ll never survive such pain. EriChad can’t take away your pain, but we hope to validate it, hold your hand, and help you find life’s rainbow.” [40]

8. www.griefinc.com,

Links to organizations and support groups (founded by Darcie Sims, PhD) [41]

9. http://www.griefnet.org/,

On-line grief support provides help to people working through loss and grief issues of many kinds. Has over 50 e-mail grief support groups and two web sites [42]

10. https://grievingdads.com/

Offers support to grieving fathers. Has corresponding book Grieving Dad’s: To the brink and back [43]

11. www.journeyofhearts.org/An online healing place for anyone grieving a loss [44]

12. https://www.newyorklife.com/foundation/bereavement

New York Life’s dedicated online resource for bereaved families and those who want to support them [45]

13. http://www.opentohope.com/

Open to Hope is an online community offering inspirational stories of loss, hope and recovery [46]

14. http://www.whatsyourgrief.com/Promotes grief education, exploration, and expression in both practical and creative ways [47]

Infant loss

1. Beyond tears: Living after Losing a child, revised edition, by Ellen Mitchell. St. Martin’s Griffin; revised & enlarged edition (March 3, 2009) [48]

2. Empty cradle, broken heart: Surviving the death of your baby, by Deborah Davis, PhD. Fulcrum Publishing; third edition, (November 1, 2016) [49]

3. Empty arms: Hope and support for those who have suffered a miscarriage, stillbirth, or tubal pregnancy by Pam Vredevelt. Multnomah; second edition (June 30, 2001) [50]

4. The grieving garden: Living with the death of a child, by Suzanne Redfern and Susan K. Gilbert, Hampton Roads Publishing; 1st edition (April 4, 2008) [51]

5. Healing a parent’s grieving heart: 100 practical ideas after your child dies (healing a grieving heart series) by Alan Wolfelt. Companion Press; 1st edition (April 1, 2002) [52]

6. Life after the death of my son: What I’m learning, by Dennis L. Apple. Beacon Hill Press of Kansas City (March 10, 2008) [53]

For grieving mothers

1. http://www.firstcandle.org/grieving-families/grief-resources/online-resources/#1

An online resource place providing support for general grief, miscarriage, stillborn loss, loss of an only child, loss of a multiple birth [54]

2. http://handonline.org/

Helping after neonatal death (HAND) is a California non-profit 501(c)(3) corporation, founded in 1981 to help parents, their families and their healthcare providers cope with the loss of a baby before, during, or after birth [55]

3. https://www.mend.org/

A Christian not-for-profit corporation whose purpose is to reach out to those who have lost a child due to miscarriage, stillbirth or early infant death and offer a way to share experiences and information through meetings, the bi-monthly newsletter, and our internet web site [56]

4. http://www.postpartum.net/

The purpose of the organization is to increase awareness among public and professional communities about the emotional changes that women experience during pregnancy and postpartum [57]

5. http://stillstandingmag.com/

Our mission is to help you embrace life for everything that it is after experiencing the loss of a child or infertility. The focus of this magazine can be broken down into three parts: Giving a voice to grief, connecting hearts around the world who have similar life experiences, becoming a resource for friends, family and medical professionals, to know how to support someone enduring child loss and/or infertility [58]

For grieving fathers

1. Grieving dads: To the brink and back by Kelly Farley with David DiCola. Grieving dads LLC (June 8, 2012) [59]

2. Swallowed by a snake: The gift of the masculine side of healing by Thomas R. Golden. G. H. Publishing, L.L.C.; 1 edition (July 1, 2000) [60]

3. The way men heal by Thomas R. Golden. G H publishing, LLC (September 1, 2014) [61].

4. When men grieve: Why men grieve differently and how you can help by Elizabeth Levang. Fairview Press; 1 edition (December 8, 1998) [62]

For grieving children

1. A child remembers by Enid S. Traisman. Centering Corp (March 1, 1994) [63]

2. A terrible thing happened – A story for children who have witnessed violence or trauma by Margaret Holmes. Magination Pr; 1st edition (February 1, 2000) [64]

3. Badger’s parting gifts by Susan Varley. HarperCollins; reprint edition (July 16, 1992) [65]

4. Help me say goodbye: Activities for helping kids cope when a special person dies by Janis Silverman. Fairview press; 1st edition (February 23, 1999) [66]

5. Healing the grieving Child’s heart: 100 practical ideas for families, friends and caregivers by Alan Wolfelt. Companion Press; 1st edition (April 1, 2001) [67]

6. Helping children cope with the loss of a loved one: A guide for grownups by William C. Kroen. Free Spirit Publishing; 1st edition (January 15, 1996) [68]

7. Helping children grieve: When someone they love dies by Theresa M. Huntley. Augsburg Books; revised edition (September 30, 1991) [69]

8. If Nathan were here by Mary Bahr. Eerdmans books for young readers; 1st edition (march 25, 2000) [70]

9. I miss you by Pat Thomas. B.E.S. Publishing; 1st edition (January 1, 2001) [71]

10. Lifetimes by Bryan Mellonie. Bantam; 1st edition (October 1, 1983) [72]

11. Lost and found: Remembering a sister by Ellen Yeomans. Centering corporation (1999) [73]

12. Reactions: A workbook to help young people who are experiencing trauma and grief. By Alison Salloum (ages 9 through adult). Centering Corp (January 1, 1998) [74]

13. Rudi’s pond by Eve Bunting. Clarion Books; reprint edition (October 18, 2004) [75]

14. The fall of Freddie the leaf by Leo Buscaglia. Slack incorporated (June 1, 1982) [76]

15. The invisible string by Patricia Karst. Little, Brown Books for young readers; reprint edition (October 30, 2018) [77]

16. When dinosaurs die by Laurie Kesney Brown and Marc Brown. Little, Brown Books for young readers; reprint edition (April 1, 1998) [78]

17. When someone dies by Sharon Greenlee. Peachtree Publishers (1992) [79]

18. When someone you love dies: A child- caregiver activity book by the National Alliance for grieving children. National Alliance for grieving children; 1st edition (2016) [80]

19. Zora Hurston and the chinaberry tree by William Miller. National Geographic School Pub; 1st edition (December 28, 2000) [81]

20. https://childrengrieve.org/

National Alliance for grieving children [82]

21. https://www.dougy.org/

The National Center for grieving children and families [83]

22. www.kidsaid.com

Safe place for kids to support each other, share artwork, stories, and feelings [84]

23. www.dougy.org/grief-resources/help-for-teens/

The National Center for grieving children and families [85]

24. https://elunanetwork.org

The mission of the Eluna foundation is to provide comfort, hope and healing to children and families affected by grief and addiction [86]

25. http://www.sesamestreet.org/sites/default/files/media_folders/Media%20Root/Grief_CaregiverGuide.pdf

This bilingual kit uses the power of Elmo and the sesame street Muppets to support grieving families. It includes the Muppets, and stories of families coping with the death of a parent; a parent/caregiver guide, and a storybook [87]

26. http://sharedgrief.org/,

The shared grief project is a multimedia site designed to bring hope to grieving children by sharing the stories of respected athletes and other celebrities who have experienced childhood loss [88]

27. https://centering.org/

A non-profit organization providing education and resources for the bereaved and providers [39]

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Pinkeney, A. (2020). Perinatal Bereavement Care. In: Denney-Koelsch, E., Côté-Arsenault, D. (eds) Perinatal Palliative Care. Springer, Cham. https://doi.org/10.1007/978-3-030-34751-2_12

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