Pregnancy and Infant Loss Awareness Month

by Laura Wood, LMSW, PMH-C, Dar a Luz On-Staff Therapist

October is Pregnancy and Infant Loss Awareness Month. Trigger warning: this is a hard subject for many — miscarriage, stillbirth, and infant loss are discussed in this article. Each are a terrible burden to bear, cause suffering that can last for years, and are not recognized enough, not talked about enough in our society.

Let’s take a moment together to recognize the importance of this subject for so many.

Miscarriage

The March of Dimes reports that “Miscarriage (also called early pregnancy loss) is when a baby dies in the womb (uterus) before 20 weeks of pregnancy. For women who know they’re pregnant, about 10 to 15 in 100 pregnancies (10 to 15 percent) end in miscarriage. Most miscarriages happen in the first trimester before the 12th week of pregnancy. Miscarriage in the second trimester (between 13 and 19 weeks) happens in 1 to 5 in 100 (1 to 5 percent) pregnancies.”

Trauma caused by miscarriages may also be impacted by having to take medicine given to help pass tissue still in the uterus, or by medical procedures to remove remaining tissue.

Stillbirth

According to the March of Dimes,”Stillbirth is when a baby dies in the womb after 20 weeks of pregnancy. Most stillbirths happen before a pregnant person goes into labor, but a small number happen during labor and birth. Stillbirth affects about 1 in 160 pregnancies each year in the United States.”

Although there has been more recognition in recent years of the importance of grieving and the possibility of spending time with the baby “born sleeping,” families often report that their burden of grief is also compounded by lack of recognition, and lack of good support.

Living in a racist society is also a factor in stillbirth, as numbers of stillbirths disproportionately affect Black, American Indian or Alaska Native, and Native Hawaiian or other Pacific Islander families. According to the CDC (2020), rates of stillbirth for each 1000 births were:

• Hawaiian/Pacific Islander, 10.59
• Non-Hispanic Black, 10.34
• American Indian/Alaska Native people, 7.84
• Hispanic, 4.86
• Non-Hispanic White, 4.73
• Asian 3.93

This is a complicated subject, obviously, and has so many pieces to it. But it is important to recognize that members of society experience these losses at different rates, and for some different reasons.

Infant loss

“Neonatal death is when a baby dies in the first 28 days of life. If your baby dies this soon after birth, you may have many questions about how and why it happened. Your baby’s health care provider can help you learn as much as possible about your baby’s death. Neonatal death happens in about 4 in 1,000 babies (less than 1 percent) each year in the United States.” — March of Dimes (2022)

And again, non-Hispanic black women are more likely to lose a baby die than women of other races and ethnicities.

Awareness

With all of the above written out, though, I don’t think facts and figures are as important in moving though grief as is the human element. These losses are profound. There are many parts to the aftermath of a loss — healing of the body, effects on relationships and marriages, helping other children cope, complicated and competing feelings, blaming of oneself or others, deciding how much to share, feeling a lack of support, bearing stinging words and painful judgments from others, feeling upset with care providers or institutions, deciding about autopsy (if it’s an option), knowing whether to do genetic counseling, dealing with medical and emotional traumas, worries about finances, having to live “normal” life, experiencing depression and/or anxiety and/or PTSD, having doubts, questioning, feeling grief/anger/sadness/hopelessness, deciding whether to try again and what that might look like… this list is long and incomplete. There are as many ways to grieve as there are people grieving.

Awareness is important, both for the individuals and families grieving and for those who care about them. One of the most important shifts in thinking about these losses is relatively new: having October as an awareness month has only been around since 1988. There are countless stories of those in generations before who were expected to remain silent in their grief; to some degree, this remains in place to this day, with the ongoing expectation of not sharing news about a pregnancy until the second trimester… just in case. Loss is a private experience, and it is also painted on your soul, and changes who you are and how you live the rest of your life. Extroverts and introverts deal with losses differently, and those within relationships often have different expectations of how the loss will be shared. It’s complicated stuff.

There is certainly still a lot of work to be done in our national and personal recognition of these profound losses, and their effects on families and individuals and communities. There is a terrible lack of data on the losses experienced by people of color, and LGBTQ+ families, and sub-communities. And while more attention has been paid in recent years to mothers/birthing parents, effects on the other parent(s) also tend to be less recognized, and it’s important to include them in our discussions of grief. Maybe some awareness can help.

We at Dar a Luz spend a lot of time celebrating and supporting families in their journeys along the often bumpy but mostly beautiful road of parenthood. We also want to take time to recognize the grieving members of our community — whether your loss is fresh or more seasoned, it matters. Your hopes and dreams and worries and pain all matter. You deserve time and space for this grief. You deserve witnesses to your grief, and people to cry with you, and good support, and plenty of time to feel it and move through it. You deserve recognition for your very individual experience and within your own identity, and as a part of the larger community of those who grieve. I hope you find what you want in most moments, and that you are empowered to seek out what you need. And I know it feels impossible sometimes, and like it will never end. Grief is complicated, and long-lasting, and brutal. It is also beautiful in its way, and it is a gift — we feel grief because we loved, and because what we miss is worth grieving.

If you’re someone hoping to better support a loved one in their grief, or someone who is grieving and trying to understand it a little more, please take a moment to read this article on good listening. Many people report that they don’t know what to say to someone who is suffering, and my response is always, “Look it up.” Good listening is a skill that is simple to learn, but takes practice and commitment. If you’re someone who is claiming space for your grief, knowing what you want from your witnesses is important too… both so you can recognize when you’re not getting what you need, and to help you find it when you need it.

Please reach out if you need support, in a loss or any other challenge. We are your community, and we care deeply and want you to have what you need.

Resources

Finally, here are some resources — because what you’re going through matters.

From Postpartum Support International (PSI)

You can find lots of free PSI Support groups HERE. And here are more resources they provide:

• Compassionate Friends – provides highly personal comfort, hope, and support to every family experiencing the death of a son or a daughter, a brother or a sister, or a grandchild, and helps others better assist the grieving family. (resources in Spanish and other languages available)
• Exhale: an After-Abortion Hotline  1-866-439–4253
• Glow in the Woods (for babylost mothers and fathers) – discussion forum and helpful posts for parents who have lost a baby.
• Griefwatch (for perinatal loss) – a publisher and manufacturer of bereavement books and materials used by families and professionals around the country.
• Georgetown University – Emotional Healing after a Miscarriage: A Guide for Women, Partners, Family and Friends
• March of Dimes – overview of dealing with grief after the death of one’s baby.
• M.E.N.D. – (Mommies Enduring Neonatal Death)- Christian, non-profit organization that reaches out to families who have suffered the death of a baby through miscarriage, stillbirth, or early infant death.
• Miscarriage for Men – website that offers directional guidance and support. A place where men, who are suffering in silence, can voice their worries, fears and just support each other, either publicly or anonymously.
• Miscarriage Matters – community of parents who have experienced the loss of our child/children, willing to offer our friendship and a listening ear.
• MISS Foundation – provides support for families struggling with traumatic grief. Family Support Packets are available with information and resources for bereaved parents, grandparents and siblings.
• PALS (Pregnancy After Loss Support) – PALS supports courageous mamas pregnant again after a loss through connection with peers, awareness in the community, education of providers, and advocacy around the world.
• Rachel’s Gift – provides support and guidance for caregivers and families enduring pregnancy and infant loss.
• Return to Zero – provides compassionate and holistic support for people who have experienced unimaginable loss during their journey to parenthood. (resources in Spanish and other languages available)
• Return to Zero: LGBTQIA+ – Support for LGBTQIA+ families
• RESOLVE through Sharing – for providers; a not-for-profit organization providing thought leadership, and an evidence-based yet compassion-first approach to bereavement care.
• SHARE Pregnancy and Infant Loss Support – mission to provide support toward positive resolution of grief experienced at the time of, or following the death of a baby. This support encompasses emotional, physical, spiritual and social healing, as well as sustaining the family unit.
• Sisters in Loss – dedicated to replacing silence with storytelling around pregnancy and infant loss and infertility of black women.
• Star Legacy Foundation – virtual grief support groups for family members who have experienced pregnancy or infant loss (group in Spanish available)
• Stillbirthday – seeks to nurture sources of perinatal bereavement, strengthen skills of healthcare professionals and increase healthy engagement of perinatal related needs among communities.
• Tears Foundation – seeks to compassionately lift a financial burden from families who have lost a child by providing funds to assist with the cost of burial or cremation services.  Also offers parents comprehensive bereavement care in the form of grief support groups and peer companions.

_{Please note: These links are provided for your convenience and are not under the control of Postpartum Support International, and are not intended as an endorsement or an affiliation by Postpartum Support International of the organization or individual so linked or named.}

From March of Dimes

• From hurt to healing (free booklet from the March of Dimes for grieving parents)
• Share Your Story (March of Dimes online community for families to share experiences with prematurity, birth defects and loss)
• Centering Corporation (general grief information and resources)
• First Candle (resources for families after the death of a child by SIDS or preventable stillbirth)
• Journey Program of Seattle Children’s Hospital (resources for families after the death of a child)
• Now I Lay Me Down to Sleep (remembrance photography)
• Perinatal Hospice & Palliative Care (resources for parents who find out during pregnancy that their baby has a life-limiting condition
• Share Pregnancy & Infant Loss Support (resources for families with pregnancy or infant loss)