The Bittersweet of an Awareness Month
Pregnancy and Infant Loss Awareness is marked every October. We spoke to Star Legacy Foundation about the awareness month and how they observe a heavy subject matter.
An awareness month is a spotlight on a timer. For thirty or thirty-one days a cause gets ribbons, a designated color, a theme, and a push to the front of everyone's feed. But this need to raise awareness exists because something was not being discussed enough. While the spotlight might reveal the cause to the general public, it also brings extra attention to the people already living with it.
October is reserved for quite a few awareness campaigns, one of them being Pregnancy and Infant Loss Awareness Month. When we saw Star Legacy Foundation's campaign climb our Explore page in the US last month, it put a cause in front of us that we honestly knew very little about. Which, as we learned, is more or less the point.
This led us to a conversation with Lindsey Wimmer, who founded Star Legacy Foundation after her son Garrett was stillborn in 2004. She is a pediatric nurse practitioner with a doctorate in nursing practice.
A birthday party that turned into a fundraiser
As Garrett's first birthday approached, the family knew they wanted to mark it. Wimmer gives the credit to her husband. "I don't want another memorial service," she recalled him saying. "Like, we want this to be a little bit of a celebration of the fact that he made us parents."
So they picked the thing the family already did together. "We have a lot of golfers in the family, so we kind of get everybody together for a fun day."
They did not make a big deal of what it was. But enough friends and family participated that the golf course offered a discount, so Wimmer went back and told everyone they were getting some of their money back.
"And every single one of them said, no, put it towards the cause. And we said, well, what's the cause? This is like a birthday party for us."
By then Wimmer had spent a year trying to understand how a healthy pregnancy could end the way hers had, and found that very few were studying it. So research became the cause, and the money went to it.
Then more people joined the golf game the next year. It became annual, and eventually a nonprofit in 2007. The real shift came in 2011, when Wimmer reached out to fifteen researchers she thought were outside-the-box thinkers who might give a very small nonprofit the time of day. Thirteen said yes, and the Stillbirth Summit was born.
One paragraph, under fetal demise
Wimmer had been hypervigilant through the pregnancy, and as a clinician she knew babies could die. She had come up on the pediatric side, where her training had gone into what can be treated once the baby is born, so it never crossed her mind that a mom, baby and pregnancy that all seemed to be perfectly healthy could end in stillbirth.
"I thought that that type of a loss was an antiquated term. Like, that's something I envisioned from 200 years ago when they didn't have the technology that we have."
So she went to the basement of her home and dug out her old college textbooks and found the one on maternal child health.
"I'll never forget the day. My maternal child health book was this big thing, you know, like several thousand pages of text. And so, first of all, I went to the index just looking for the word stillbirth, and it didn't even exist."
She worked through the pregnancy complications section until she found it. One paragraph, under the clinical term fetal demise, saying that in such cases the family would need additional emotional support. Nothing on how such losses happen, nothing on how to navigate one, and nothing on how to prevent it.
That missing paragraph is more or less the foundation’s job description now. Star Legacy funds research, recruits families to participate in studies, and provides continuing education to health professionals. The same effort goes into what her textbook had disposed of in one line as emotional support. Bereavement care is where Wimmer sees the most progress.
"Just by and large, the level of bereavement support that's been offered for families has risen so much. It was pretty unusual 20, 30 years ago for families to be offered pictures of their babies. And now it's pretty unusual to find someone who wasn't at least offered."
Wimmer knows that their work is far from done. But when Garrett was born, the word stillbirth did not appear on the website of the American College of Obstetricians and Gynecologists. Now there are guidelines.
What October looks like from the inside
October does not change what the foundation does on a daily basis. It merely changes the volume. "Kind of puts it on steroids a little bit," Wimmer said. "It's just we try to take advantage of the fact that [the issue] is on people's radars a little bit more than it might be at other times of the year."
The calendar fills accordingly. A free virtual education session for nurses and other healthcare professionals. The foundation's virtual support groups. Research spotlights. This year, for the first time, a Family Summit, where families meet researchers. The experts are sharing their studies, but here it is reframed around what a grieving family can actually do with it.
The chapters that are spread across the United States also carry the campaign in their own ways. On October 15, Pregnancy and Infant Loss Remembrance Day, families join the International Wave of Light: a candle lit at seven in the evening, local time, and kept burning for an hour, so that as each time zone reaches seven the light never actually goes out.
Wave of Light by Nebraska Chapter. Credit: Star Legacy Foundation
A special screening of Speaking Grief was hosted in New York. It is a documentary by WPSU that explores how uncomfortable American culture is with grief and what we can do to transform it.
Speaking Grief event by Western New York Chapter. Credit: Star Legacy Foundation
And then there is the part Wimmer is careful about, which is the reason for the headline on this piece.
"We also try to be sensitive to the fact that this can be a very bittersweet type of thing. On one hand, it's fantastic that it's being talked about and it's raising awareness, and that really gives us an opportunity to get our message out. But it can also be incredibly challenging for families that are grieving, or especially if they're early in their grief process, to just have it there even when they're not looking for it."
So the awareness that the foundation puts out carries the support alongside it. The month is built for two audiences at once: the people who need to learn that this happens, and the people who already know, and would like some say in how often they are reminded.
A light object for a heavy subject
The Twibbon was published in 2023 by the foundation's social media team. Sarit Bridell, who coordinates marketing and communications, described the intent as: "a way to expand brand awareness [of Star Legacy] and encourage people to show their support for families impacted by pregnancy and infant loss."
"The frame was made available to the public as a free download on our website," Bridell wrote, promoted through the foundation's social channels and email list. It has been reissued every October since. The campaign has 515 supporters and was still climbing our Explore page three years after it was published, which tells you the Twibbon takes a quieter route to campaigning, one that works over years rather than in a burst.
Wimmer then explained the role it plays in terms that have nothing to do with reach. "A lot of times the families will say, it's hard for me to share my loss or to talk about it, but I can do something like [wearing the Twibbon]. And it's just my way of making sure that my baby is recognized and remembered this month, or to let other people know that I'm thinking about my baby, or I'm having a rough time."
It is also, in her words, another kind of sign that their baby matters and exists.
"So sorry, but so honored"
At the top of Star Legacy’s Instagram profile there is a line addressed to whoever has just arrived: “Welcome, we are so sorry you found us but are so honored you did.”
Welcome message via Instagram
It is written for a parent who went looking for this foundation, and who almost always had a reason to. Sorry for the reason, honored to be the ones they reached.
Wimmer is on both sides of that sentence. Chapters across the United States, research funding, training for clinicians, free support for families, all of it built out of a golf game that was supposed to be a birthday party. None would exist if Garrett had lived.
It was not a new thought for her. “No, exactly. And, you know, I’m tremendously proud of what we’ve done. But also, I wish every day that this job wasn’t needed.”
