In Samantha Casiano’s house, Sundays are for family. And for the last two years, that’s included a trip to the cemetery.
Every week, they visit her daughter Halo’s gravesite. It sits in the middle of their small East Texas hometown. A gray placard lies on the ground with Halo Hope Villasana written in pink script, along with an engraved photo of the tiny infant with angel wings and her brief lifespan: March 29, 2023 (11:47 a.m.) – March 29, 2023 (3:30 p.m.).
This week, their Sunday visit falls on Día de los Muertos. Day of the Dead is a multi-day celebration that honors souls who have passed on from the living and dates back to Aztec and Mayan cultures. In most Latin American traditions, an altar is set up with photos and offerings of food, trinkets, and candy as a way to remember what loved ones enjoyed while they were alive. The belief is that for one night, the souls visit their families to let them know they’re OK in the afterlife.
Casiano didn’t grow up recognizing the tradition. But as she’s grieved her daughter, her family has helped her lean into her Mexican culture, including Día de los Muertos.
“I probably wouldn’t have really understood it unless my mother-in-law told me, it’s a really big thing to embrace death as it’s a natural part of life, you know, something that is going to happen, but you acknowledge that with love and respect,” Casiano said.
Casiano’s suegra (mother-in-law), Rosalinda Gomez, is from Michoacán, a state along the western coast of Mexico that is recognized by UNESCO for its celebrations the week leading up to and on Día de los Muertos.
The family first built an ofrenda for Halo last year. It was a small one, with just a few family photos of Casiano’s grandparents who have died and a picture of Halo.
This year, they plan to go bigger. Casiano’s mother-in-law sent her an encouraging note ahead their preparations:
Remember you was crying because you did not know how you can honor Halo so we talk about it and you told me you feel like a part of you died that day. So I told you in Mexico we do the ofrenda to honor the familia we lost. I do it always, every year.
I told you es okay to cry. The part of you that died es with Mija and will come and smile with us this day.
Why Halo died an agonizing death
Halo was diagnosed with anencephaly, a fatal fetal anomaly, during a 20 week anatomy scan. Despite being told by doctors that the baby girl would die at birth, Casiano was not allowed to choose an abortion to stop her daughter’s suffering due to Texas’ strict abortion laws.
In 2021, Texas banned abortions after a fetal heartbeat is detected, usually around six weeks. It became the first state in the country with a bounty hunter abortion ban, which incentivizes citizens with a cash “bounty” if they succeed in suing anyone who has helped a person get an abortion. Texas also has a trigger ban in place that outlawed almost all abortions in the state when Roe v Wade was overturned.
This year, state legislators walked back some of the previous laws, saying they were too restrictive, and have allowed doctors to choose abortions if “the mother’s life is at risk.” But that does not include fatal fetal anomalies like Halo’s.
“I can vividly remember her gasping for air. I can remember the colors that she changed as if it was just yesterday. I can remember seeing her without a skull,” Casino said. “I should have had that right to give her mercy and compassion, and it was stripped from me as a mother, and that makes me angry.”
Casiano joined a group of mothers in Zurawski v. State of Texas, a lawsuit against the state arguing that denied abortion care resulted in risks to their health, fertility, and lives. Though they lost their case, Casiano still joins the other plaintiffs for panels, rallies, bus tours and conferences to advocate for reproductive rights.
Despite the time that’s gone by, Casiano still feels pain from her daughter’s loss because of the suffering she says she was forced to go through.
“The grieving sneaks up all the time. One day we’re just going, having a great day, and then it just kind of comes our way,” Casiano said. “I still get random phone calls from the hospital like the checkups. It’s been two plus years, and they’ll say, ‘Hey, we’re just checking on mommy and baby and see if you guys have such and such appointments.”
The World Health Organization recognizes that many mothers do not receive appropriate and respectful care when their baby dies during pregnancy or childbirth, despite comparatively high infant mortality rates in the U.S. versus other developed countries, and the commonality of miscarriages.
“The dominant culture in the U.S. does not want to focus on sorrow and loss, grief, illness, aging or death. People who are grieving frequently report receiving messages that they need to ‘move on,’ achieve ‘closure’ or ‘get over it’ more than they are invited to continue sharing the story of their loss,” Taryn Lindhorst, director of the Center for Oncology and Palliative Care Social Work at the University of Washington School of Social Work, told UW Medicine.
Researchers in Denmark looked to understand how parents grieve the loss of a pregnancy or newborn. Their study, published in 2023, found that parents who had a stillbirth or a newborn die were more likely to be in a chronic grief group a year later, compared to parents who had a miscarriage or ended a pregnancy due to medical reasons.
While organizations like the Center for Reproductive Rights, Abortion in America and Free & Just have stepped up to support Casiano in her journey as an advocate, turning to her ancestral traditions with ofrendas has helped bring a sense of emotional healing, even if only temporary.
“I never really did this until, you know, my suegra was like, ‘No, you need to understand that this is what this is for. We do this so that way they know that they’re loved and we remember them,’” Casiano said.
As with many Indigenous-rooted cultural traditions, the wisdom in ofrendas has been carried through generations of lived experiences. Science is now beginning to document what families have known and practiced for centuries. Canadian researchers studied parental grief after an infant death in the NICU. Their work, published this summer, shows that parents’ coping improved with memory-making activities like taking pictures, making handprints, and creating keepsakes.
Or in Sam’s case, building out her ofrenda with pictures and colors that honor Halo.
“Pink and green are her colors,” Casiano said. “Pink because she’s a girl, and green because of anencephaly. Anencephaly is the green ribbon, so we tried our very best to bring awareness to anencephaly.”
Honoring Halo through advocacy
Casiano has found some solace and a purpose in advocating for greater reproductive rights.
“I want Texas to make it right,” she said. “I want Texas to make the laws better for other women like myself.”
Empathy would have made her loss easier to handle, she said. Empathy for her, carrying a baby deemed incompatible with life. And empathy for Halo. That’s still the part that stings the most, and what leads to some of the hardest questions Casiano gets from people who don’t understand her view that abortion can be the compassionate option.
“I have this cousin,” Casiano said, “She’s autistic, but she’s very blunt. And she’s always asking me the best questions. And, you know, she says stuff like, ‘Why do you go over there? She’s dead.’ And I’m just like, ‘Yeah, she’s gone, but she’s in a better place, and we honor her, and we thank her for having to go through that.’”
“Even if we did get an abortion, she’s still our daughter,” she continued. “But it would be different, though, if we got, if we were able to release her sooner.”
She’s been able to communicate some of that through Halo’s ofrenda, thanks to the push from her mother-in-law.
“She’s like, ‘You don’t understand how big it is, Samantha, you need to be able to honor her, and know she’s there in spirit. And she knows that you love her and that you’re fighting for her, and that you want mercy and compassion for her,’” Casiano said.
Those lessons — in how her ancestors handled grief, and how they accepted death as a part of life — have been helpful as Casiano figures out the path ahead.
“It’s like another life when someone dies, it’s another life that you have to learn,” she said. “You have to learn certain traditions and I’m learning and I’m honored to have my suegra Rosie help me with that, because I didn’t understand before, but now I’m forced to understand.”.
The journey is not easy, but reminders from her mother-in-law about how her Mexican ancestors handled death keep her going:
“We celebrate her after death where she is not in pain because she’s free and will visit con tus abuelos.
You make them proud mijita you are her madre, you know her pain. This day we honor her. The world knows her story because of you, people know she suffer. Your ancestors are proud of your work you doing. Her sangre fluye a través de ti. (Her blood flows through you) On this day you visit the old, you and remember the crying and why you fight.”