By Lisa Thompson, Michigan, Indiana, USA

I remember when I saw the news. I was scrolling through my Facebook feed, looking for a birth announcement. Sarah¹, one of the mothers in our local LLL Group, had gone into labor the night before. I was eager to hear the details of her birth. Sarah’s page had a post written by her partner with pictures of Sarah and the new baby. Her doula doubled as a photographer. She had taken stunning portraits. But something was wrong. Sarah held a tiny baby wrapped in a blanket, but she looked heartbroken. I read the post. “Jacob was born sleeping.” I scrambled to comprehend. Finally, it registered. Her baby was gone. Stillborn. But babies don’t die during birth in this day and age, do they?

It turns out, they do, and in far greater numbers than I ever would have suspected. Every day more than 7200 babies are stillborn (WHO). The numbers don’t tell you much about the human emotions behind those losses, emotions that are often hidden away. Odds are good that someone near you has experienced infant loss and no one told you.

What to say

I knew I needed to respond to the announcement of Jacob’s stillbirth. Condolences are one of the few things I know how to do. I’ve prepared appropriate words to say to those who have lost parents, grandparents, or even a spouse. But the loss of a child, a baby who had never really lived, felt like a new level of devastation. I turned to the Internet, scrolling for meaningful words. Most of the sites I found focused on offering direct support to parents after a loss, but several had articles for friends and family. According to Still Standing Magazine’s “What Do We Say to a Grieving Parent,” and the Compassionate Friends “How Can I Help Brochure,” there may not be any “right words.” Sometimes your silent presence, or admitting you don’t know what to say is enough. My final message read along the lines of: “I am so sorry for your loss. I don’t know what to say. I’m heartbroken for you.”

Coping with grief

My co-Leaders and I had a previously scheduled meeting with a Leader Applicant for the following day. We came together to complete our task, but also to talk and connect. One of my co-Leaders was due in a few months. She was using the same midwife as Sarah and her plans suddenly felt unstable. If stillbirth had happened to Sarah, could it happen to her? The thought was terrifying. We wept and held one another.

Leaders may need to support one another when a mother in the Group loses an infant. We have our own emotions and fears to work through. Perhaps we have experienced infant loss ourselves, through stillbirth, neonatal death, or miscarriage. Help your co-Leaders talk and decompress after difficult events and conversations, or if you need help yourself, call a support person. Take turns offering aid to the family, such as bringing meals or babysitting, running errands, or just sitting to talk with the parents. Be sure you and your co-Leaders are following basic self-care as you give of yourselves both mentally and physically. Caregiving can take a toll.

Community support

You might find yourself supporting others in your community as well. As Leaders, we can offer a listening ear and make suggestions about articles to read or support groups to join. I found myself offering emotional and practical support not only to Sarah, but also to mothers in our Group, Sarah’s doula, her ICAN² leader, and outside friends. I was consulted on proper funeral attire, appropriate gifts, how to find the right words, and how to help. I was not an expert in these things and I didn’t always know the answer. I shared articles from the ”Loss Resources” section at the end of this article because the writers knew so much more than I did. I came to realize that it didn’t matter if I gave the “right” answer. Just as new mothers need to express their feelings and get a touch of reassurance to keep moving, these wonderful, supportive women needed the same. A friend who is an LLL communications skills instructor told me that sharing grief can be the most powerful kind of support, particularly when you don’t know what to say or what to do. She was right.

Details can wait

News began to trickle through the birth community about what had gone wrong during Sarah’s birth. We were hungry for details. If we knew what had happened, perhaps we could prevent it from happening to us. But tragedy doesn’t work that way. Rumors and stories can come back around and hurt us. As much as we wanted to know the details of Sarah’s birth, we decided to hold back from asking. When Sarah was ready, she would share. Until then, we would support her. We knew she was hurting over Jacob’s stillbirth. The reason he died didn’t matter.

Early ideas for future comfort

Issues that we might have helped with had come and gone. Many mothers appreciate photos of their baby with themselves and family members. Organizations like “Now I Lay Me Down to Sleep” or local photographers can take professional level portraits. Hospitals and volunteers make footprints and create remembrance boxes. There are organizations that provide clothing and blankets for stillborn babies as well. My Group keeps names of local organizations on hand now in case we get the news in time to offer information.

The funeral

The funeral announcement came through Facebook. My co-Leaders called and messaged one another to be sure we could all attend, arranging childcare and carpooling. We discussed having a flower arrangement delivered. We worried over bringing newborns and about how toddlers would weather the service. Sarah looked dazed when we arrived. There was an open casket. I hugged Sarah and used Jacob’s name. I told her how beautiful he was. We cried. My co-Leaders and I, and a handful of mothers in the Group, huddled together in the pews of the church, passing a box of tissues. The service was deep and moving. One of my co-Leaders helped with Sarah’s two-year-old to be sure she didn’t wander away in the cemetery. We stood in the summer heat, swatting mosquitoes. I have never felt the silent presence of people as a physical force before. Those present helped support Sarah’s family through their heart-crushing grief.

After the funeral

At first, friends and family surrounded Sarah, staying with her and caring for her family’s needs. Over time, that one-on-one support eased off. Sarah began to reach out, asking for help. Sometimes she asked for help babysitting her two-year-old or for someone to come and help her with house work. Sometimes she needed to talk, because her feelings were just too heavy to handle. When Sarah expressed her grief, we encouraged her to continue working through her feelings. She told us she felt pressured to put away her pain, to hide it from the world. As Leaders, we have learned to name and express feelings so we can communicate heart to heart. My co-Leaders and I encouraged Sarah to feel everything: to cry and scream and rage. She started to call this work “feeling all the feels.” People who allow themselves to feel deep emotions often reach equilibrium more quickly. Helping mothers who have suffered a loss find the words to label the feelings can help them express their emotions. They may find peace in “letting it all out.”

Anger

During one of Sarah’s online vents, she expressed anger at everyone involved in the birth. She felt guilty about these feelings, but she wanted to blame someone, even if it was herself. A struggle with guilt and blame is common for people who are grieving. We encouraged Sarah to face her anger, to decide whether anyone or anything was to blame for Jacob’s death. If she did find true fault, she might seek to come to a place where she could forgive and/or accept in order to guide her healing (as much as anyone can heal from losing a baby). It was possible that there was no one to blame. The “what ifs” might not matter. You can do everything right, follow all the rules, and still, tragedy jumps out of nowhere and knocks you flat. Once it begins, you can’t stop it from devastating you.

Sharing sad news

A week after Jacob’s passing, mothers in the Group began asking questions. “Have you heard from Sarah?” “Did she have her baby?” “Wasn’t she well over due?” My co-Leaders and I realized that a Group announcement might be needed. Friends had set up a meal train (sharing meals) for the family. My co-Leaders and I thought that perhaps sharing the sign-up list for that would help us to break the news. But we had read that it was best to allow the parents to decide how to announce infant loss. Sarah gave us permission to share the news with our Group. She requested that we not include the meal train link, since she did not want people calling her or bringing food if she didn’t know them very well.

Privacy matters

Always consult with the parents before you share personal information about their loss, particularly if it involves sharing names, phone numbers, or addresses. Be sure to ask what help would be best for them at this time. For example, some families may not want food. They may have allergies or have picky eaters, and maybe having food brought to their home feels stressful.

Donations and gifts

Sarah’s family had started an online fundraising site to raise funds for a headstone for Jacob. The family was fine with having friends share this information. My co-Leaders and I made small donations, and we encouraged other friends to donate as well. Some families may need financial care along with emotional support. Others might prefer emotional support and request making donations to a relevant charity. If you would like to contribute financially, you might ask if donations would be appreciated. Several mothers in our Group banded together to purchase an engraved necklace for Sarah with Jacob’s name and birth date. Flowers can be unwelcome as they are reminders of death when they fade. Small tokens of lasting remembrance are often appreciated, whether real or monetary.

Coping with milk supply

As Sarah’s milk came in, she began to have trouble. Her two-year-old was still nursing, which helped initially. When they were separated, Sarah was unable to keep up with the abundance of milk. Sarah turned to the pump, but struggled to gain relief. She sent me a message, asking for help. We talked about whether she thought it was a good idea to use herbs or cabbage to reduce her supply, but she decided against it as her two-year-old was still nursing. I sent Sarah the Stanford Hand Expression video to see if that would help. Then I watched it (lesson learned—always watch first!). The video talked about getting colostrum for your newborn so she could thrive and be healthy. I sent a quick note to Sarah indicating that she should not watch that video! Then I frantically searched for videos without babies or mentions of babies. So many resources assume healthy, happy births and I hadn’t thought of the potential triggers before. For a mother who has lost a baby, LLL can be full of painful reminders. Sarah avoided socializing and attending our meetings for a long while. We understood that she needed the space.

The hand expression videos helped. Sarah was able to relieve her engorgement and slow her supply to a manageable level. I shared that some mothers find comfort in donating their milk. Milk banks provide pasteurized human breast milk to sick and premature babies around the world. I provided information about a nearby milk bank. Sarah chose instead to donate her milk to a local mother in need.

As time goes by

Eighteen months later, Sarah has returned to our meetings with her rainbow baby³ in arms. She smiles and laughs sometimes, and offers patient support to other mothers. Seeing pregnant mothers and newborns still hurts her, I think, but the intense trauma appears to have eased. Mothers sometimes announce their lost babies during introductions at our meetings now. I never would have thought of suggesting that before, but things have changed. We won’t ever be the same.

Sarah’s story

I went to LLL meetings regularly during my pregnancy, and so after I had Jacob, I had a lot of support from everyone. Someone set up a meal train for us and we received meals for at least a month. Honestly, I don’t think we would have eaten if it hadn’t been for those meals. Having people visit and support me to continue nursing my two-year-old was also helpful. I felt comfortable going to a Leader for suggestions about engorgement and pumping whenever I had to be separated from my older child. Two of my favorite resources for baby loss are stillbirthday.com, and a great book called Empty Cradle, Broken Heart. There are so many wonderful support groups, blogs, and other online resources. Lots of mothers pump their milk to share with other babies, while others decide to try and dry up their milk supply, which comes with its own challenges. Finding people who have been in that situation is extremely helpful. I’ve since had another baby, and while it was painful to think about attending meetings while pregnant, I’ve started going again, and I feel just as welcomed as I was before. The support has been invaluable through my loss and subsequently nursing my new baby.

Loss Resources

International

Stillbirth Alliance

Still Birthday (English)

Still Birthday translations (Afrikaans, Arabic, Dutch, German, Italian, Korean, Polish, Spanish, Thai)

Still Birthday perspectives (Alternative Families, Single Mothers, Teen, Military, LGBTQ+, Cultural, Spiritual Specific; scroll for links)

Australia

Sands miscarriage, stillbirth, and newborn death support

Heartfelt Photographic Memories

Canada

PAIL Network (Pregnancy and Infant Loss)

France/French

L’Association l’ Enfant Sans Nom – Parents Endeuillés

Un bébé est parti, groupe de soutien LLL au deuil périnatal (LLL specific)

Netherlands/Dutch

Vereniging Ouders van een Overleden Kind

Switzerland/French/English

Agapa Suisse Romande

Expatparent Birth and Bereavement Support

Zoe Bailey Photography

UK

Glow in the Woods

Sands (Stillbirth and neonatal death charity)

Saying Goodbye (Remembrance Services)

USA

National Share Pregnancy & Infant Loss Support

MISS Foundation

Still Standing Magazine

Grieving Dads

Loss Doulas

Still Birthday (International)

Baby Loss Family Advisors (US/Canada)

Lactation Issues

Lactation After Loss: A Guide for Bereaved Mothers from Empty Arms Bereavement Support (brochure)

“Post Loss Lactation” from Still Birthday

“Lactation Suppression” from the Australian Breastfeeding Association (PDF)

“Lactation Suppression” from Breastfeeding Basics

“Hand Expression” (video; baby-free)

International Milk Banking Initiative

Art/Writing/Photography

Now I Lay Me Down To Sleep (photography/international)

Carly Marie Project Heal (self-care and mindfulness inspiration)

The Amulet: Exploring the Hidden World of Infant Loss (art/UK)

Faces of Loss, Faces of Hope (stories)

Grieve Out Loud (pen pal program)

Mikayla’s Grace (knit/crochet/sewing/clothing and blanket patterns)

NICU Helping Hands (wedding gown donations to make clothing: US, Canada, and Australia)

Self-Care/Gifts

Earth Mama Angel Baby (US) & Earth Mama Angel Baby (UK)

Still Birthday Memento Ideas & Still Birthday Jewelry Ideas

Articles for Parents

“Postpartum Health”, Stillbirth Day

“Experiences of Grief”, Healing Hearts

“Practical Information for Parents Coping With Loss in Late-Stage Pregnancy or Early Infancy”, Angel Babies

“Freya’s Gold: Milk Donation After Loss”, Lactation Matters

“Parenting Gently Through Grief and Loss”, Natural Parents Network

“Children and Grief: 10 Tips”, Journey Through Grief

Articles for Family/Friends/Support Providers

“How to Help a Friend Survive the First Year after Pregnancy or Infant Loss”, Still Standing Magazine

“What do We Say to a Grieving Parent”, Still Standing Magazine

“How Can I Help”, The Compassionate Friends

“Guidelines for health care professionals supporting families experiencing perinatal loss”, Canadian Paediatric Society

Lisa Thompson is a Leader in Northwest Indiana, USA, about an hour outside of Chicago, Illinois, USA. She completed her accreditation in February of 2006. Lisa has three children, Liam (11), Ryan (7), and Keira (5).

¹ Names have been changed

² International Cesarean Awareness Network

³ Rainbow baby: a baby who is born following a miscarriage or stillbirth.

⁴ Contains pseudoephedrine, a decongestant.