HCLS Pregnancy and Infant Loss Resources

by Kimberly J

Black and white image of a tiny baby foot - which measures only as big as the top joint of a fingertip- is shown surrounded by an adult hand.
Photo by Kimberly J – shared in memory of Todd & George

In 2013, I was pregnant twice. Both of these pregnancies ended in stillbirth. The next few months were a bit of a blur. I felt alone, isolated, shameful, and guilty about my body’s failures. Medical terminology surrounding pregnancy loss did little to dispel these feelings. Words like miscarriage, incompetent cervix, and inhospitable uterus felt like they, too, were laying the blame at the mothers’ feet. One day, a book arrived in the mail from a dear friend which made me feel less alone. I found it helpful to hear others’ stories and experiences that mirrored my own. That book was the catalyst for my grieving process and healing. If you are struggling, I hope that one of these books or DVDs might bring the same sense of catharsis and comfort to you. If someone you know has recently experienced a similar loss, I hope these resources will help you relate to them and know how to help.

Don't Talk About the Baby DVD cover shown. Hand holds a dandelion, which has seeds blowing in the wind. Under are the words "Shatter the Stigma"

Don’t Talk About the Baby is a documentary film presenting first person accounts of infertility, miscarriage, and stillbirth. It addresses the cultural stigma of silence around these losses. The film includes interviews from mothers and fathers from around the US. It seeks to normalize the grieving process – and addresses how this grief is often invisible to outsiders, because to them the baby wasn’t visible. Additional insight is provided by a bereavement doula and other doctors. Content Warnings: Contains photos of deceased children. Couples talk about subsequent pregnancies and live births. Features discussion during a religious/Christian support group. Don’t Talk About the Baby is available on DVD from HCLS.

The Brink of Being: Talking About Miscarriage: Bueno, Julia book cover shown over sunset image in pink, purple, and blue.

The Brink of Being: Talking About Miscarriage was written by a therapist who specializes in working with women who have experienced pregnancy loss and infertility. She also shares her own experiences with miscarrying 22-week twins. This book is laid out in a “chronological” retelling of losses – starting at the first weeks, and progressing throughout the stages at which miscarriage losses can occur. A chapter towards the end also speaks about memorials and remembrances. Stories are told in intimate and graphic detail. This book includes chapters on early, late, and recurrent miscarriage. It also offers insights into the perspectives of partners, fathers, family members, and loved ones. Content Warnings: Stories of subsequent pregnancies and living births are integrated into the narrative. Graphic descriptions, including the at-home birth of a embryonic baby. Definitions are given in terms recognized in the UK – miscarriage there is defined through 24 weeks, while in the US, babies born as soon as 20 weeks are termed stillborn.

About What Was Lost: Jessica Berger Gross, editor. White vase is filled with ivory dandelions.

About What Was Lost is a compilation from 20 different writers who share their own stories of loss. This anthology offers a catharsis with honest (sometimes painful) re-tellings of private grief. Authors share their personal experiences and feelings about abortion, miscarriage, twin loss, and premature infant death. Each story and experience is unique to the author and reflects many perspectives on pregnancy and infant loss. Content Warnings: Subsequent pregnancies and live births are discussed. Abortion loss is covered in multiple accounts.

High Risk: Stories of Pregnancy, Birth, and the Unexpected: Karkowsky MD, medical scrubs and gloves in the background of the text.

High Risk is written by a Maternal Fetal Medicine specialist (MFM) also known as a high-risk OB/GYN. She seeks to fill the void of information about what might happen. Told from a medical point-of-view, this book seeks to answer the call, “I wish someone had told me.” This book concisely details some of the most common diagnoses that bring patients to a MFM. It offers information on the processes, medical terminology, and decision making during pregnancy complications. In the chapter on stillbirth, the most common causes are discussed and dissected. The author also addresses some of the reasons behind the medical avoidance on the subject of stillbirth. This book presents a history of medical knowledge/treatments around pregnancy complications and the current standards (or lack thereof) of care when loss occurs. While it tells stories of real patients, it is from a detached medical perspective.

Kid Gloves: Nine Months of Careful Chaos: Knisley, Lucy, Knisley, Illustrated image of a pregnant mother with baby inside her belly

Kid Gloves by Lucy Knisley is a graphic novel available in both paperback and as an ebook via Overdrive. It portrays the author’s struggle with early miscarriage and the depression that followed her losses. These feelings of isolation and sadness are compounded by shame, guilt, and loathing of her own body. She recounts advice that eventually led her to healing… to treat herself with “kid gloves.” Lucy later receives a medical reason for her miscarriages, and goes on to recount her experiences through a pregnancy (with complications) and the eventual birth of a living child. She addreses the history of birthing practices and the notion of “natural” childbirth with humor and accuracy. Content Warnings: more than half of the book recounts the author’s successive pregnancy and battle with pre-eclampsia.

Return to Zero movie cover. Family of 3 is shown next to water, with mother and father looking into distance with a sailboat in the background.

Return to Zero is a fictional film portraying stillbirth loss. It is based on the true story of writer/director/producer Sean Hanish and his wife. This movie shows how stillbirth shatters the lives of a successful and prosperous couple. The shock and disbelief Minnie Driver portrays when confronted with the semantics surrounding her upcoming birth echoed my own experiences with stillbirth. You never think that you’ll be asked about funerals and autopsies on the day you’re going to give birth. The movie goes on to depict the daily struggles of both parents as they navigate holidays, baby showers, and well-meaning outsiders. They are helped through a successive pregnancy by a doctor who has also experienced loss. Reception to the movie has led to the founding of RTZ: Hope which aims to shine a light on pregnancy loss and stillbirth. Content Warnings: Photos of deceased children are shown. Stillbirth labor and delivery are depicted. Subsequent live birth is portrayed. Return to Zero is available from HCLS on DVD.

Three Minus One: Stories of Parents' Love and Loss by Jessica Watson, Sean Hanish, Brooke Warner. Sunset image of a butterfly drawn in the sand with the beach surf at its edges.

Three Minus One is an ebook available on Hoopla from HCLS. Inspired by the Return to Zero film, it is a compilation of over 80 individual essays, poems, and pictures submitted by mothers, fathers, relatives, and friends. Most of these stories focus on stillbirth and infant death, with several perspectives from families whose doctors declared their babies “incompatible with life” before they were born. Other topics include the loss of a toddler, the elective abortion of a Trisomy 21 baby, and miscarriage. This collection is a journey through their grief and pain, but mostly focused on the love these parents have for their children. Many explore what it means to move forward, for this after is nothing like what came before. Content Warnings: Photos of deceased children are shown. Several narratives include subsequent living children.

Three book covers shown: Healing Your Grieving Heart After Miscarriage, Healing Your Grieving Heart After Stillbirth and Healing a Parent's Grieving Heart.

Healing Your Grieving Heart is a series of books available for Howard County Library patrons via Hoopla. They are written by Dr. Alan Wolfelt, a grief educator who offers practical ideas and concrete action-oriented tips to aid in the mourning process. Each title in the series addresses the unique concerns for each situation – from confronting what you did or did not see during the miscarriage process to taking & displaying pictures of a stillborn baby. The author offers practical, bullet-pointed ideas on how to practice self compassion while grieving. His tips are based on advice solicited from families who have experienced these losses. I found it helpful in a concrete way, when so much about the grieving process feels murky and disorienting. The author offers 100 ideas in each book. If some don’t feel right to you, his advice is just to skip it and move on. Self care is central to his philosophies, but moving from the emotion of grief to the action of mourning takes work and reflection. There are many titles available, but these three are most relevant to my post today:
Healing Your Grieving Heart After Miscarriage
Healing Your Grieving Heart After Stillbirth
Healing a Parent’s Grieving Heart

The content provided is for informational purposes only; it is not intended to be used instead of professional medical opinion or advice. All information, content, and materials available on this site are for general informational purposes only.

Kimberly J is a DIY Instructor and Research Specialist at the HCLS Elkridge Branch. She is the mother to two living sons and two stillborn sons.

October is Pregnancy and Infant Loss Awareness Month

Upclose photograph of a statue of a grieving woman with her eyes closed, looking downward.
This statue of a grieving mother sits in the Star Garden Cemetery, reserved for babies who died before they had a chance to live.

by Kimberly J

For women who know they’re pregnant, about 15 percent of pregnancies end in miscarriage.1 About one pregnancy in 100 after 20 weeks of pregnancy is affected by stillbirth, and each year about 24,000 babies are stillborn in the United States.2 In 2018, the infant mortality rate in the United States was 5.7 deaths per 1,000 live births.3

Loss affects approximately 1 in 4 known pregnancies. Which means if it hasn’t happened to you, it has happened to someone you know. Yet, this subject is often surrounded by silence. That silence is isolating and discouraging. Not knowing what to say or what to do are the most common reactions when someone you know or love is experiencing this kind of loss, but silence is not the answer. Absence of support and acknowledgment can compound the grief and loss felt after such an event.

If you have experienced this type of loss, I am so sorry. After my losses, I started a journal of sorts and labeled it, “Things to Help?” In compiling the resources listed, I kept that thought in mind. Below is a list of materials and resources to hopefully help anyone experiencing such a loss (and those who love them) break the stigma of silence and shame. I hope these resources aid you in processing and working through the grief you may be struggling with. Sometimes, just knowing you are not alone can be of comfort.

“When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, there isn’t a word to describe them. This month recognizes the loss so many parents experience across the United States and around the world. It is also meant to inform and provide resources for parents who have lost children due to miscarriage, ectopic pregnancy, molar pregnancy, stillbirths, birth defects, SIDS, and other causes.

– RONALD REAGAN, 1988
DECLARING OCTOBER PREGNANCY & INFANT LOSS AWARENESS MONTH.

Local Resources – Central Maryland

Rising Hope Perinatal Hospice & Bereavement Program: at Howard County General Hospital – This program is free of charge and offers support during and after pregnancy. They offer emotional and practical support as well as referrals to support groups, therapists, and funeral directors. Contact: Amanda Meneses, 410-884-4709, adeane3@jhmi.edu – View their brochure by clicking HERE

Springboard Community Services: (formerly Family & Children Services of Central Maryland) is a local nonprofit that aims to make mental health services available to all. They provide social services including counseling and group therapy. Their website is www.springboardmd.org

Stillborn and Infant Loss Support (SAILS Maryland): This is a newer group supporting central Maryland families and run by Sadija Smiley, who has experienced loss herself. This group seeks to help those who have experienced a loss feel less alone. On their website, bornintosilence.org, they have compiled a list of national resources and created a remembrance wall to acknowledge lost babies.

Dear Mama: Hosted by HCLS (Sponsored by Friends and Foundation of Howard County Library System and The Women’s Giving Circle of Howard County. In partnership with Worcester County Library). This is a thematic multimedia exhibit depicting pregnancy and motherhood through the eyes of emerging artists of African descent. The aim is to create for the viewer emotional resonance as well as understanding of the health disparities impacting women of color. Join us for a day of dialogue and healing as we discuss the physical and emotional health of black mothers and mothers to be. This event will take place online on October 24th from 10am – 2pm. Register here.

Statewide and National Resources

MIS (Miscarriage, Infant Death, and Stillbirth) Share: This parent-led support group currently meets virtually to offer information, support, and comfort to parents at any stage of the grieving process. Specialized support groups are available throughout the DMV area. Find a brochure about their services by clicking here. Their website is www.misshare.org

Center for Infant & Child Loss: The Center is run by the University of Maryland Department of Pediatrics and is committed to increasing the understanding of sudden infant and child death, risk reduction practices, grief, and compassionate intervention. Contact: 800-808-7437. Their website is infantandchildloss.org

The Compassionate Friends: This is a national group offering peer-led support for bereaved parents, siblings, and grandparents who have experienced the death of a child of any age. Call the national office: 877-969-0010 or visit the website for local chapter information: www.compassionatefriends.org

Star Legacy Foundation – Maryland Chapter: This group seeks to decrease stillbirth rates through education and fundraising for research. They are also a resource for grieving families, who can call 952-715-7731 (ext. 1) to speak to a grief counselor. In addition, The Star Legacy Foundation coordinates volunteer efforts to make a difference locally with bereavement care packages and training for hospital staff. The Maryland chapter website and contact information can be found here.

MARYLAND CRISIS HOTLINE: 1-800-422-0009: This statewide 24 hour intervention and supportive counseling hotline is for depression, suicide, loneliness, family and relationship problems, shelter needs, violent or threatening domestic situations, chemical dependency issues and others.

Online Resources

  • CDC STILLBIRTH RESOURCES: The Center for Disease Control and Prevention has compiled resources for information and scientific articles regarding stillbirth. Also featured on this site are stillbirth stories from volunteer contributors. Visit the website here. Trigger Warning: The “Family Stories” section contains photos of deceased children.
  • Glow in the Woods: This site hosts online forums and archives “for babylost mothers and fathers.” The forums are labeled to help visitors avoid triggers for those that want to share, but are still sensitive to hearing about others who are trying to conceive (TTC) post-loss. The archives are filtered by category, allowing you to find narratives where the experiences/feelings mirror your own. Subjects in the archives range from depression, anger, and guilt to intimacy, memorials, and family. The website is glowinthewoods.com.
  • INSTAGRAM:
    • @LoveCommaDad – This account consists of a series of videos from a stillbirth and miscarriage father who shares loss stories and advice from other baby-loss dads in their own words to offer support for one another.
    • @RefugeInGrief – Most posts on this account feature the hastag #perfectlynormal – letting you know that whatever you’re feeling, this reaction is a normal part of the grieving process. This shared grief experience can be helpful, though infant/pregnancy loss is not specifically mentioned. Run by Megan Devine, author of It’s ok that you’re not ok : meeting grief and loss in a culture that doesn’t understand
    • @Miscarriage.Stories – Part of the nonprofit Managing Miscarriage, this account offers a place for sharing miscarriage stories. This account encourages submissions from followers in order to break free from the isolation and silence that usually accompanies miscarriage.
  • PODCASTS:
    • Stillbirth Matters! -from the Star Legacy Foundation – there are currently 30 episodes, mainly interviews with medical professionals, fathers, and mothers. The focus is mainly on stillbirth and infant loss stories. However, several episodes speak directly to infertility and pregnancy loss
    • Managing Miscarriage – this community-sourced podcast provides a forum for women to share their stories. It highlights narratives from women who have experienced miscarriage as well as expert perspectives from doctors. There are currently 76 episodes.
    • Sisters in Loss spotlights faith filled black women who share their grief and pregnancy loss stories. According to the NIH, black women are twice as likely to experience late miscarriage and stillbirth than white women. New episodes weekly; episodes include resources and strategies to heal and find a path forward after loss.

The content provided is for informational purposes only; it is not intended to be used instead of professional medical opinion or advice. All information, content, and materials available on this site are for general informational purposes only.

Kimberly J is a DIY Instructor and Research Specialist at the HCLS Elkridge Branch. She is the mother to 2 living sons and 2 stillborn sons.

1. “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. As many as half of all pregnancies may end in miscarriage. We don’t know the exact number because a miscarriage may happen before a woman knows she’s pregnant. Most women who miscarry go on to have a healthy pregnancy later.” Source: March of Dimes

2. “Stillbirth affects about 1 in 160 births, and each year about 24,000 babies are stillborn in the United States. That is about the same number of babies that die during the first year of life and it is more than 10 times as many deaths as the number that occur from Sudden Infant Death Syndrome (SIDS).” Source: CDC

3. “Infant mortality is the death of an infant before his or her first birthday. In 2018, the infant mortality rate in the United States was 5.7 deaths per 1,000 live births.” Source: CDC