Pregnancy Loss and Newborn Death SIG

The Pregnancy Loss and Newborn Death Work Group is moving forward! We would value your input, insight, and participation. We hope you will consider joining this much-needed special interest group.

If you are interested in joining the Pregnancy Loss and Newborn Death distribution list, and/or attending the Regional meetings, please contact the Executive Office.

COMMITTEE CHAIR


Deborah Rich, PhD, PMH-C, Licensed Psychologist
Chair, Pregnancy Loss and Newborn Death Work Group

Founder, Shoshana Center for Reproductive Health Psychology

Creator, MommaCare TM Training and Outreach
Email: deb@shoshanacenter.com

Support Groups

  • Return to Zero: Hope - rtzhope.org is a national non-profit organization that provides holistic support, resources, and community for all people who have experienced unimaginable loss during the journey to parenthood.
    • Pregnancy and Infant Loss (Birthing Parent or Couples)
    • Recurrent Loss and Infertility (Birthing Parent)
    • Ending a Wanted Pregnancy (Birthing Parent or Couples)
    • People of Color Pregnancy and Infant Loss (Birthing Parent)
    • LGBTQ+ Affirming Space for Pregnancy and Infant Loss (Birthing and Non-Birthing Parents)
    • Early Pregnancy Loss (Birthing Parent)
    • Pregnancy After Loss (Birthing Parent)
    • Parenting After Loss (Birthing and Non-Birthing Parents)
  • Parents with Empty Arms Support Group (St. Luke’s Hospital, Schwartz Center, Room A, Cedar Rapids) - facilitated, self-help support group for parents who have lost a baby or young child (<2 years of age) due to ectopic pregnancy, miscarriage, stillbirth, sudden death, or terminal illness. Meets 3rd Monday of each month at 6:30-8:00PM. Contact: 319-369-7347.
  • The Compassionate Friends – Supporting Family After a Child Dies;  Iowa chapters located in Algona, Avoca, Carroll, Dubuque, Marshalltown, Mason City, Muscatine, Nevada, North English, Sioux City, Waverly, West Burlington, West Des Moines.
  • Postpartum Support International online support groups - postpartum.net/get-help/psi-online-support-meetings
    • Black Moms in Loss Support Group
    • Early Pregnancy Loss Support from Moms
    • Fertility Challenges
    • Pregnancy After Loss
    • Pregnancy and Infant Loss for Moms
    • Pregnancy and Infant Loss for Parents
    • Stillbirth and Infant Loss for Moms
    • Termination for Medical Reasons
  • Grieving Support for LBGBTQA+ Parents - https://babyinheaven.com/support-grieving-lgbtq-parents/

Local Support/Information:

  • No Foot Too Small nofoottoosmall.org – “Together, may we CELEBRATE the babies we fought for and lost…COMMUNICATE the reality and heartbreak of infant mortality…And fund critical initiatives to support families experiencing loss while working to CURE the abnormalities that threaten healthy pregnancies every single day.”

  • Moms with Hope Group – (Pella, IA) for moms who have lost a child due to miscarriage, stillbirth or infant death; “All moms are welcome, no matter where you are in the grief process and no matter how long it has been since your loss.” For more information on meetings (now virtual), call Deanne at 641-620-5050.

Hotlines

  • First Candle phone support - Grief Counselors are available 24/7 at 1-800-221-7437

  • After-Abortion Talkline - 1-866-4-EXHALE - Exhale's free national talkline provides emotional support, resources, and information to women who have had abortions, as well as to their partners, family, friends, and allies. Calls are confidential.  Service is available in multiple languages, including English, Spanish, Cantonese, Mandarin, and Vietnamese. Talkline is open during the following times: Monday through Friday, 5-10pm PST; Saturday and Sunday, 12-10pm PST.

Grief/Loss Web Resources:

  • Return to Zero: Hope rtzhope.org - is a national non-profit organization that provides holistic support, resources, and community for all people who have experienced unimaginable loss during the journey to parenthood.
    • Retreats, pregnancy and infant loss provider directory, webinars and support groups, education and resources
  • Remembering Our Babies - the official site of pregnancy and infant loss remembrance day: october15th.com
  • Support/resources for parents who have lost a child to miscarriage, stillbirth, SIDS, etc.:

nationalshare.org

facesofloss.com

firstcandle.org/grieving-families

gruporenacer.wordpress.com (Spanish)

babyloss.com

miscarriagesupport.org.nz

missfoundation.org

babiesremembered.org

pailnetwork.ca

handonline.org

griefnet.org

faithslodge.org 

rtzhope.org

  • The joyful mourning Instagram/website -  themorning.com
  • National Perinatal Association - nationalperinatal.org/publications 
  • Glow in the Woods - “parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged, understood.” glowinthewoods.com
  • Still Standing Magazine - Surviving Child Loss & Infertility -stillstandingmag.com
  • Hannah’s Prayer Ministries – Christian support for fertility challenges or death of a baby hannah.org
  • M.E.N.D. (Mommies Enduring Neonatal Death) - Christian, non-profit organization that reaches out to families who have suffered the loss of a baby through miscarriage, stillbirth, or early infant death - mend.org
  • Nechama Comnfort – Supporting Jewish Families Through Pregnancy Loss nechamacomfort.org
  • Center for Loss in Multiple Birth (CLIMB) - climb-support.org

Grief/Loss Web Resources (cont'd):

  • Grieving Dads website – option to contribute your own story: grievingdads.com
  • Grieve Out Loud – includes 1) a pen-pal program for bereaved parents or grandparents and 2) a very comprehensive resource page listing support services and products: grieveoutloud.org
  • A Butterfly’s Touch - non-profit Christian organization providing support to parents whose lives have been impacted by the heartbreaking loss of a child to early pregnancy loss, stillbirth, or newborn death: abutterflystouch.org
  • STILL- “STILL is a feature length documentary film project aimed at breaking the cycle of silence surrounding pregnancy and infant loss. STILL will tell the stories of individuals and families from all walks of life who have suffered the death of a baby during pregnancy or infancy.”  stillproject.org
  • Star Legacy Foundation - non-profit organization dedicated to stillbirth research and education; parents, families, and friends of stillborn babies who are dedicated to reducing the number of families that endure such a needless tragedy; mission is to increase awareness, support research, promote education, and encourage family advocacy. starlegacyfoundation.org

Grief/Loss Books:

  • Love Lasts Forever: A Journal of Memories by Noelle Andrew & Sheila Frascht - (“this journal gives you the space to chronicle the story of your child…precious memories you never want to forget”)
  • Ghostbelly: A Memoir by Elizabeth Heineman - the author’s personal account of a home birth that goes tragically wrong—ending in a stillbirth—and the harrowing process of grief and questioning that follows.
  • A Silent Sorrow – Pregnancy Loss: Guidance & Support for You & Your Family by Ingrid Kohn & Perry-Lynn Moffitt
  • Empty Cradle, Broken Heart, Revised Edition: Surviving the Death of Your Baby by Deborah Davis
  • Unspeakable Losses: Understanding the Experience of Pregnancy Loss, Miscarriage, & Abortion by Kim Kluger-Bell
  • An Exact Replica of a Figment of My Imagination: A Memoir by Elizabeth McCracken - (McCracken tells her own story in this touching and often unexpectedly funny memoir about her life before and after losing her first child in the ninth month of pregnancy.)
  • Grieving Dads: To the Brink and Back by Kelly Farley
  • This Lovely Life by Vicki Forman
  • A Guide for Fathers:  When a Baby Dies by Tim Nelson
  • Forgotten Tears:  A Grandmothers’ Journey Through Grief by Nina Bennett
  • Life Touches Life:  A Mother’s Story of Stillbirth and Healing by Lorraine Ash & Christiane Northrup, MD
  • Our Babies Have Died:  Stories of Miscarriage, Stillbirth, and Neonatal Death by Sands Vic

    Grief/Loss Books (cont'd):

    • Our Stories of Miscarriage:  Healing with Words by Rachel Faldet
    • The Anguish of Loss by Julie Fritsch with Sherokee Ilse
    • When Bad Things Happen to Good People by Harold Kushner
    • When a Baby Dies: The Experience of Late Miscarriage, Stillbirth, & Neonatal Death by Nancy Kohner & Alix Henley
    • Couple Communication After a Baby Dies:  Differing Perspectives by Sherokee Ilse & Tim Nelson
    • Empty Arms: Coping with Miscarriage, Stillbirth, & Infant Death, Surviving the First Hours & Beyond by Sherokee Ilse
    • When Hello Means Goodbye: A Guide for Parents Whose Child Dies Before Birth, at Birth, of Shortly After Birth by Paul Kirk & Pat Schwiebert
    • Coping with Miscarriage: A Simple, Reassuring Guide to Emotional & Physical Healing by Mimi Luebbermann
    • Surviving Pregnancy Loss: A Complete Sourcebook for Women & Their Families by Rochelle Friedman & Bonnie Gradstein
    • Letter to a Child Never Born by Oriana Fallaci
    • Healing Your Grieving Heart After Miscarriage: 100 Practical Ideas for Parents and Families by Alan Wolfelt, PhD
    • Healing Your Grieving Heart After Stillbirth: 100 Practical Ideas for Parents and Families by Alan Wolfelt, PhD & Raelynn Maloney, PhD

    Children's Books About Loss:

    • There Was a Baby by Laura Camerona - This book is for children whose family experiences a miscarriage, stillbirth, or infant death. Oftentimes, families don't know how to explain something this tragic to a child. The book gives families words to support feelings that a child may have and to move forward as a family unit. Appropriate for children ages 1-11.
    • We Were Gonna Have a Baby, But We Had an Angel Instead by Pat Schwiebert
    • Something Happened: A Book for Children and Parents Who Have Experienced Pregnancy Loss by Cathy Blanford
    • The Invisible String by Patrice Karst (discusses general loss or separation, not necessarily perinatal loss)

        Pregnancy After Loss:

        • Pregnancy After Loss Support (PALS) – online support, web magazine, and other resources - pregnancyafterlosssupport.org
        • Pregnancy After Loss Support: Love Letters to Moms Pregnant After Loss by Emily Long - “This book is a simple book of love written for you, a mom pregnant again after loss, from other loss moms who have been where you are now.”
        • Pregnancy After Loss: A day-by-day plan to reassure and comfort you by Zoe Clark-Coates - “The pages are packed with crucial advice, tips to overcome anxiety, stories from people who have encountered baby loss and journeyed subsequent pregnancies, wisdom from experts in healthcare, guidance to help process layers of grief, coupled with a day-by-day support journal to walk you through your entire pregnancy.”

        In Memory Of:

        • The Kindness Project - began in 1996 as a way for families to honor their deceased child and to help themselves heal by performing random (usually anonymous) acts of kindness in their community; a little card is left behind so that the person who benefits from the kindness knows that someone's life and death continues to matter. missfoundation.org/support/kindness

        Products and Services:

        Podcasts:

        Traumatic Childbirth/PTSD:

        • Prevention and Treatment of Traumatic Childbirth (PATTCh) – has a great resource guide with article and tips. pattch.org

        Fetal Anomalies: Pregnancy Continuation/Termination Issues - Web & Book Resources:

        • Adopo: “We’re an international reproductive justice co-operative on a mission to provide holistic, stigma-free abortion care and education in our communities.” (has listings for abortion doulas) wearedopo.com/about 
        • Ending a Wanted Pregnancy: endingawantedpregnancy.com
        • Terminations Remembered: terminationsremembered.com/tfmr-stories  A safe space to find support and honor our angels after the hardest choice - termination of a desired pregnancy for medical reasons.
        • Precious Lives Painful Choices: A Prenatal Decision-Making Guide by Sherokee Ilse

        Fetal Anomalies: Pregnancy Continuation/Termination Issues (cont'd):

        • A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life is Expected to Be Brief by Amy Kuebelbeck & Deborah Davis, PhD
        • A Time to Decide a Time to Heal: For Parents Making Difficult Decisions About Babies They Love by Molly Minnick, Kathleen Delp, & Mary Ciotti
        • Our Heartbreaking Choices: Forty-Six Women Share Their Stories of Interrupting a Much-Wanted Pregnancy by Christie Brooks
        • AmnioDex amniocentesis decision explorer amniodex.com
        • Blog for women who have undergone abortion after 20 weeks gestation due to fetal anomalies. (“We are the face of later abortion. Real stories from real women.”) 1in10blog.wordpress.com
        • arc-uk.org Antenatal Results and Choices website – London-based
        • aheartbreakingchoice.com - Website for parents who have undergone pregnancy termination due to poor prenatal diagnosis.
        • babycenter.com (“termination for medical reasons” message boards & online support groups)
        • Perinatal ComfortCare - program designed for parents who have received a devastating prenatal diagnosis of “incompatible with life” and choose to continue the pregnancy. perinatalcomfortcare.org
        • perinatalhospice.org  - Perinatal Hospice & Palliative Care: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief
        • isaiahspromise.net - Isaiah’s Promise: Support for Families Carrying to Term After a Severe or Fatal Prenatal Diagnosis
        • carryingtoterm.org
        • All That Love Can do: allthatlovecando.blogspot.com/p/for-fathers_19.html

          Local Maternal Mental Health Hotlines for Providers:

          Many states, through local and federal funding, have maternal mental health support lines for providers (obstetricians, psychiatrists, family medicine, therapist) to help with treatment knowledge, can provide assessments, and local resources. Search your state for “maternal mental health line”. They will often provide support in loss as well. Below are some examples:

          Massachusetts: MCPAP for Moms: mcpapformoms.org

          Provider line: 855-Mom-MCPAP (855-666-6272)

          North Carolina: NCMATTERS: med.unc.edu/ncmatters

          Provider line: 919-681-2909

          Louisiana: LAMHPP: medicine.tu

          Provider line: 504-988-9171

          Handouts/Articles Available - Please Request One!

          MISCARRIAGE/RECURRENT PREGNANCY LOSS:

          • Miscarriage and the sense of personal failure
          • Recurrent pregnancy loss
          • ASRM Patient’s  Fact Sheet: Recurrent pregnancy loss
          • Suspected causes of recurrent pregnancy loss
          • Increased risk for postpartum psychiatric disorders among women with past pregnancy loss
          • To our family and friends: what to say and what not to say

          GENERAL MENTAL HEALTH ISSUES:

          • How to talk to someone about depression
          • Building your resilience
          • Sleep hygiene
          • Mood-boosting workouts
          • Eat to beat stress
          • What works and what doesn’t (psychotropic and related medications)
          • Deep breathing exercise
          • Progressive muscle relaxation exercise

          An Invitation to Marcé Members

          We welcome suggestions for additional links that will benefit the mental health of women, their infants and partners around the time of childbirth

          Previous Events

          Citation List

          Farren, J., Jalmbrant, M., Ameye, L., Joash, K., Mitchell-Jones, N., Tapp, S., Timmerman, D., & Bourne, T. (2016). Post-traumatic stress, anxiety and depression following miscarriage or ectopic pregnancy: A prospective cohort study. BMJ Open, 6(11), e011864. https://doi.org/10.1136/bmjopen-2016-011864
          A pilot study looking at emotional distress in women after early pregnancy loss (miscarriage or ectopic pregnancy) as compared with women with ongoing pregnancies.  At 1-month and 3-months post-loss, PTSD, anxiety and depression were all higher in the early pregnancy loss group than in the control group.  Notably 28% (1-month) and 38% (3-months) of women with early pregnancy loss met diagnostic criteria for probable PTSD.  (England)

           

          Abiola, L., Legendre, G., Spiers, A. et al. (2022). Late fetal demise, a risk factor for post-traumatic stress disorder. Science Reports, 12, 12364.  https://doi.org/10.1038/s41598-022-16683-5
          Prevalence of PTSD after experiencing late-term fetal demise was found to be 44.2% at 15 days after late-term fetal demise, 34.1% at 1-month post-demise, and 9.1% at 3-months post-demise.  Peritraumatic dissociation, seeing the fetus during hospitalization, holding the fetus, and funeral service planning were associated with PTSD symptoms in this sample.  (France)

           

          Loughnan, S.A., Boyle, F.M., Ellwood, D. et al. (2022). Living with Loss: Study protocol for a randomized controlled trial evaluating an internet-based perinatal bereavement program for parents following stillbirth and neonatal death. Trials, 23, 464. https://doi.org/10.1186/s13063-022-06363-0
          Rationale and protocol of Living with Loss, a self-guided online perinatal bereavement support group for stillbirth or neonatal death.  This paper provides the outline of this RCT comparing the intervention to care as usual (study is in progress; no data reported).  (Australia)

           

          Herbert, D., Young, K., Pietrusińska, M., & MacBeth, A. (2022). The mental health impact of perinatal loss: A systematic review and meta-analysis. Journal of Affective Disorders, 297, 118–129. https://doi.org/10.1016/j.jad.2021.10.026
          Systematic review and meta-analysis of studies published between 1995 and 2020 found that there was greater risk of depressive and anxiety disorders in those with perinatal loss than in non-loss controls.  Posttraumatic stress was not significantly different between groups in the three studies that examined this.

           

          Fernández-Basanta, S., Coronado, C., Bondas, T., Llorente-García, H., & Movilla-Fernández, M. J. (2022). Unravelling the grief of involuntary pregnancy loss: A meta-ethnography of midwives’ and nurses’ emotional experiences. Scandinavian Journal of Caring Sciences, 36(3), 599–613. https://doi.org/10.1111/scs.13028
          A qualitative approach synthesized 11 studies on the emotional experiences of midwives and nurses caring for parents who have perinatal loss.  Midwives and nurses care for bereaved parents through looking for meaning, expressing grief, and both focusing on and moving away from the loss.

           

          Farren, J., Mitchell-Jones, N., Verbakel, J. Y., Timmerman, D., Jalmbrant, M., & Bourne, T. (2018). The psychological impact of early pregnancy loss. Human Reproduction Update, 24(6), 731–749. https://doi.org/10.1093/humupd/dmy025
          A review paper of early pregnancy loss (including miscarriage and ectopic pregnancy) and association with anxiety, depression and PTSD.  In women, depression and anxiety are high at 1-month after loss (8%-20% with at least moderate depression; 18-%-32% with anxiety); partners also had anxiety and depression but at lower levels.  PTSD was associated with early pregnancy loss in three studies (25%-39% of women at 1-month).

           

          Roberts, L. R., Sarpy, N. L., Peters, J., Nick, J. M., & Tamares, S. (2022). Bereavement care immediately after perinatal loss in health care facilities: A scoping review protocol. JBI Evidence Synthesis, 20(3), 860–866. https://doi.org/10.11124/JBIES-21-00053
          Perinatal bereavement care guidelines are summarized in this scoping review protocol.  Proposed criteria include guidelines in health care facilities pertaining to miscarriage, stillbirth, or neonatal death and that measure parents’ mental health outcomes.

           

          Pekkola, M., Tikkanen, M., Loukovaara, M., Paavonen, J., & Stefanovic, V. (2022). Stillbirth aftercare in a tertiary obstetric center – parents’ experiences. Journal of Perinatal Medicine, 50(6), 844–853. https://doi.org/10.1515/jpm-2022-0246
          A study that provides information on the experiences of parents subsequent to a stillbirth, including feeling supported during delivery, having enough time holding the baby, and feeling supported on the unit; while follow-up visits were helpful, they also were associated with increased anxiousness.  Partners tended to have more positive experiences than mothers and post-discharge support was felt to be inadequate.  (Finland)

           

          Patel M. (2022). The impact of respectful and compassionate bereavement care following stillbirth. BJOG : An International Journal of Obstetrics and Gynaecology, 129(10), 1740. https://doi.org/10.1111/1471-0528.17146
          This is a commentary on Sands et al. study and emphasizes the continued need for good bereavement care after stillbirth, particularly around communication with parents and opportunities for meaning- and memory-making. (UK)

           

          Lewkowitz AK, Cersonsky TEK, Reddy UM, et al. (2022). Association of perceived lack of paternal support after stillbirth with maternal postpartum depression or anxiety. JAMA Network Open. 5(9):e2231111. doi:10.1001/jamanetworkopen.2022.31111
          This study examined mothers’ perceived support from male partners following stillbirth.  The majority of women endorsed paternal support.  About half of the sample endorsed postpartum depression or anxiety; however, those women who had lower perceived paternal support were significantly more likely to experience postpartum depression or anxiety.  (US)

           

          Kristvik E. (2022). The precarious space for mourning: Sick leave as an ambiguous topic in bereaved parents’ accounts of the return to everyday life after reproductive loss. Culture, Medicine and Psychiatry, 46(2), 490–507. https://doi.org/10.1007/s11013-021-09728-
          Qualitative study of bereaved parents after stillbirth with particular focus on allowance for mourning and sick leave.  Concerns around how bereavement is categorized, medicalized, and even pathologized within a particular country’s system and what leave policies should allowed are discussed.  (Norway)

           

          Hollins Martin, C. J., & Reid, K. (2022). A scoping review of therapies used to treat psychological trauma post perinatal bereavement. Journal of Reproductive and Infant Psychology, 1–17. Advance online publication. https://doi.org/10.1080/02646838.2021.2021477
          This scoping review sought out studies of therapies to treat trauma stemming from perinatal bereavement.  Only 4 studies were found to treat PTSD in this time period, with CBT and grief-counselling being helpful in reducing trauma symptoms after perinatal loss, but that yoga was not helpful in addressing these symptoms.

           

          Aggarwal, N., & Moatti, Z. (2022). “Getting it right when it goes wrong – Effective bereavement care requires training of the whole maternity team”. Best Practice & Research. Clinical Obstetrics & Gynaecology, 80, 92–104. https://doi.org/10.1016/j.bpobgyn.2021.10.008
          This article provides evidence-based practice implications for supportive bereavement care after stillbirth or neonatal death, with an international perspective.  Specifically, the authors highlight the importance of structured training for the whole team providing maternity care.

           

          Mergl, R., Quaatz, S. M., Edeler, L. M., & Allgaier, A. K. (2022). Grief in women with previous miscarriage or stillbirth: a systematic review of cross-sectional and longitudinal prospective studies. European Journal of Psychotraumatology, 13(2), 2108578. https://doi.org/10.1080/20008066.2022.2108578
          This systematic review considered a number of factors in relation to perinatal grief.  Findings included that grief is high after miscarriages and stillbirths and that their grief tends to decrease over time.  This review was unable to conclude any specific differences between single versus recurrent pregnancy loss.

           

          Cacciatore, J., DeFrain, J., & Jones, K.L.C. (2008). When a baby dies: Ambiguity and stillbirth. Marriage & Family Review, 44(4), 439-454. https://doi.org/10.1080/01494920802454017
          Using qualitative data from families who experienced stillbirth, this article sensitively uses Pauline Boss’s framework on ambiguous loss to further understand the experience of grieving a stillborn baby.  The authors discuss stillbirth and families’ sense of it being an unseen loss and how families manage and live with loss.  (US)