Case Study · Bereavement Storytelling

The Butterfly Program

Three films in which bereaved families tell their own stories, so the next family who walks into Loma Linda University Children’s Hospital knows they are not alone.

▶ Watch Our Grief Journey · 13:58 event version

Client

Loma Linda University Children’s Hospital

Program

NICU Bereavement Butterfly Program

Occasion

A Walk to Remember, 2013 and 2015

Films

Carrying Colin, My Mia and Our Grief Journey

Running time

10:05, 10:17 and 13:58 (19:00 full-length)

Where it lives

Always in My Heart support group page, YouTube and Vimeo

The Challenge

The Butterfly Program supports families who are grieving the loss of their baby through miscarriage, stillbirth or newborn death. Loma Linda University Health has reported roughly 200 such losses each year at Children’s Hospital. The program answers with counseling, bereavement literature, Always in My Heart support groups, a Children’s Grief program and, every October, A Walk to Remember, a free event that gives families a place to honor their babies.

The hardest part of this kind of loss is how quiet it is. The parents in these films say so themselves: baby showers keep arriving, friends move on, and the visits and dinners fade. The program’s promise is to connect families with someone who knows what they are going through. A list of services cannot make that promise. Another family has to.

The Approach

We made the films for A Walk to Remember in 2013 and again in 2015, and held to one idea throughout: the parents tell it, and they tell all of it.

• The parents are the only voices. There is no narrator and no expert on camera. Each film is first-person, in the parents’ own words, over music, with room to breathe.
• Fathers speak too. Grief after infant loss is often pictured as a mother’s. In these films, fathers talk about wanting to be at every ultrasound and about the helplessness of watching a wife grieve, and the films are stronger for it.
• Begin with the joy. Carrying Colin opens on a father imagining coaching his child’s team, and Joanna waking him with a pregnancy test on leap day. My Mia opens on a card with three pregnancy tests. Our Grief Journey opens on a birthday. The loss lands because we first see the love.
• Tell the parts people avoid. In Our Grief Journey, anger, guilt, doubting God and dreading other people’s good news are all on screen. A parent watching from the audience learns that what they feel is normal.
• End on presence, not closure. No film promises that grief ends. Each closes on the child’s place in the family: Colin as “our baby boy,” Mia as a presence in the family’s lives, and a grief with “no expiration.”
• Let the community be the turn. In Our Grief Journey, the pivot is a bereavement group, where a parent finally meets someone who has been there. That is the moment the Always in My Heart groups exist to create.

Inside the Film

Our Grief Journey follows three families across the 13:58 event version embedded above, from a birthday at a graveside to a hard-won hope. The subtitle carries the arc: Finding Community | Experiencing Hope. A longer, 19-minute version lives on YouTube.

1. 0:11
   Open on a birthday. Cupcakes and a card for a daughter’s birthday, a visit to the graveside, notes and balloons. “She gives us hope, and we want to share that hope with everyone.”
2. 1:27
   The birth. A mother describes the moment her daughter is born: happiness and sadness at once, and holding back tears so she will remember her daughter’s eyes, ears and tiny nose. “I was sad because I was giving birth to death.”
3. 2:47
   The empty house. A home bought for a daughter she does not have. “I was waking up in the middle of the night, searching for her.”
4. 4:42
   The questions. Guilt and the what-ifs, then a first real struggle with faith, then anger. “I had to be okay with not knowing the answer.” “I know it’s not socially acceptable to be angry.”
5. 6:52
   A world that moves on. Baby showers, pregnancy announcements and questions about trying again. What this parent needed most from people was “the freedom to feel what I was feeling.” “I was genuinely so happy for them, but I was grieving my daughter.”
6. 8:25
   The father’s side. A husband who wants to fix it and cannot. Being “helpless to help” is its own kind of grief, and the film makes room for it.
7. 9:10
   Finding the group. A conversation in a bereavement group that one parent calls life-changing, and the relief of sitting among people who have felt the same. “It’s okay to feel this way, and it will pass.” Another parent says they wanted to meet someone ten years down the road who was still functioning and living.
8. 11:14
   Still a mother. “Regardless if I have children in the future, I’m her mom and she’s my daughter, and I think that bond is unbreakable.” Grief becomes a capacity to care for other people.
9. 12:54
   Hope, without an ending. At the ten-year mark, one family says it plainly: “There is no expiration on grief.” The film closes on the line a parent has been working toward all along, “at the end of my journey, I will be okay.”

“Finding community. Experiencing hope.”

Where It Started: A Walk to Remember 2013

Two years before Our Grief Journey, we told two families’ stories in full, one film each, running about ten minutes. They are the model the later film grew from.

A Walk to Remember 2013

Carrying Colin · the Perry Family

▶ Extended cut · 10:05

“He wasn’t just a baby with anencephaly. He was our baby boy.”

Joanna and Brian Perry learned at an ultrasound that their baby had anencephaly, a fatal diagnosis, and that most likely he would be stillborn. They chose to carry to term. Some in the medical field pushed back, and the six weeks after the diagnosis were, in their words, the worst of their lives: “Together, we’ve never felt so alone.”

The film’s turning point is a woman named Amanda, who told them there was joy in this journey. Go on a date night. Take your baby to the park. Instead of “we only have seven months,” think “you got seven great months ahead of you.” They read Colin The Giving Tree every night and learned he liked Seinfeld and pancakes at 11 p.m. Colin was stillborn on October 24. What he left them, in their words, is a way to live: “to embrace every day.”

A Walk to Remember 2013

My Mia · the Lloyd Family

▶ Extended cut · 10:17

“Time doesn’t heal all wounds. Time does allow us to deal with it a little bit different.”

The Lloyds’ film opens on a card with three pregnancy tests, “one of the most happiest days I’ve ever experienced,” and a first daughter they named Mia. Every doctor’s visit went well. Then, at 3 a.m., Diana woke knowing something was wrong. The drive to the hospital normally takes 20 minutes. “Seemed like two hours. We didn’t say anything. We were scared.”

The film stays in the room as three nurses try to find a heartbeat and leave “with such a sad expression on their face,” and as the parents read the ultrasound screen for themselves: “No fetal heartbeat.” Mia was beautiful, with black curly hair and her mother’s lips. The autopsy came back inconclusive, and the questions stayed. The film moves forward to a son, Isaiah, whose cry “just meant so much,” and a daughter they named Hope. “We are not replacing Mia with any other child. We’re just expanding our family.”

The Result

Together, the three films give the Butterfly Program something a brochure cannot: families in their own words, at the length the story needs. Our Grief Journey now lives on the hospital’s Always in My Heart support group page, where families considering a first meeting can hear from three families who have been there. The full-length version is on the Loma Linda University Health YouTube channel, and the event version and the 2013 films are on our Vimeo.

A Walk to Remember has now reached its 21st year. This year’s walk is Sunday, October 18, 2026, at 3:30 p.m. at Loma Linda University Children’s Hospital, and it is free to attend.

“It’s okay to feel this way, and it will pass.”

Produced by j michael media, llc for Loma Linda University Children’s Hospital’s NICU Bereavement Butterfly Program. Carrying Colin (the Perry family) and My Mia (the Lloyd family) for A Walk to Remember 2013; Our Grief Journey for A Walk to Remember 2015. Our Grief Journey lives at lluh.org/…/always-my-heart-support-groups. If you are grieving the loss of a baby, Loma Linda University Health bereavement services can be reached at 909-558-7261 or griefsupport@llu.edu.