When she set out to memorialize her son, Nancy Macias wanted to remember him alive.
In 2010, Macias was 24 weeks into a difficult pregnancy. The baby wasn’t developing like he should. Some days she would get good news, but on others, everything would take a turn for the worse.
Macias had been in the United States for almost five years. She came from Teocalitche, in Mexico’s Jalisco region, and settled in Oakland with her husband Marco and her daughter, Evelyn. She didn’t speak any English, and struggled to navigate the pregnancy without any help.
Macias delivered her baby, Axel Aaron, by Cesarean at 6 months. He lived just two and a half days.
Macias remembers him squeezing her finger with his tiny hand. “I couldn’t carry him or anything, because he was so small and fragile,” she said. “He squeezed me tight. I felt his strength in such a tiny little hand. Even though it was a sad experience, his life was beautiful.”
“We were united,” she continued. “It’s like he told me that he would never leave me, that he would always be there, even if he wasn’t there physically.”
After the delivery, the hospital staff referred Macias to MADRE, a program administered by the Alameda County Public Health Department. MADRE—an acronym for Maternal Access and Linkages for Desired Reproductive Health—works with Latina women who have experienced the loss of a child, either during pregnancy or at birth. They also work with women who are pregnant and know that their babies will not survive.
The program’s social workers and administrators are multilingual, and provide a much-needed link to help Latina women cope with the grief of child loss while navigating an unfamiliar healthcare environment.
Just before the Day of the Dead this year, Macias worked with the MADRE team and 29 other women in the program to make a little shadowbox altar—a nicho—for the baby that she lost. She filled it with things she never had the chance to give him: a green baby shirt and a green rattle with a smiling elephant. Next to them, Macias placed a tiny white bonnet with a blue cross that she affixed to the brim. She rested a picture of her final ultrasound on the shirt, and under it, a Winnie-the-Pooh blanket, stitched with the phrase: “On a perfect day, a hundred acre wood can seem like a thousand.”
“I didn’t want to include the photos I took after he passed away. Everything in the nicho has meaning,” said Macias. “It’s hard to explain. It’s very personal. Everything you include is so personal.”
The nichos are being exhibited in an installation called Nuestros Angelitos (Our Little Angels) through January 3 at the Oakland Museum of California. They are included in a bigger show called Rituals + Remembrances, a part of the museum’s annual Day of the Dead exhibit, which celebrates memorialization practices in different cultures.
In one of the boxes, a mother placed a print of her baby’s footprints next to a bonnet with his name, Anakin, written on the brim in blue glitter. His mementos lie among blue and white plastic flowers and a miniature toy rattle.
Another contains the photograph of a toddler looking out the window, his hand resting on the pane. Surrounding the photo are images of his mom holding his tiny hand in hers.
A prayer card in another box depicts the Virgin Mary, regal in a robe of gold and blue, clutching her hands in prayer. Her gaze rests beneath her on a small cut-out of a basketball and a toy-sized baby rattle.
Each nicho was created for the exhibition by a woman who participated in the MADRE program. Some losses are more recent than others. Each story is bound to the others in a shared language of grief.
The museum has been marking the Day of the Dead since 1996 with both a one-day community celebration and an exhibit that runs through the fall. The museum partners with professional artists and community organizations to make the work. This year, featured pieces include a six-foot mandala by artist Nancy Hom and an origami portrait of celebrated California artist Ruth Asawa, created by her granddaughter Lilli Lanier. Students from MetWest High School also crafted an audiovisual installation that celebrates their heritage.
MADRE was invited to participate by Evelyn Orantes, the museum’s curator of public practice, a new position designed to create a bridge between the museum and the Oakland community. She approached MADRE with the idea that the mothers could create individual nichos, the small altars that are ubiquitous in Catholic churches throughout the world, traditionally used to venerate saints. Nichos are also used in Mexican folk art, created by those seeking to honor departed ancestors and loved ones. Orantes said that nichos come from the heart and serve as a link from their creator to the spiritual realm—a way to celebrate and memorialize their own.
The museum had previously worked with other organizations to make nichos. Orantes said she comes back to them as a medium because of the breadth of experience they convey. “You have an individual voice,” said Orantes, “but at the same time, they are clustered together as a community, so all the voices come together as a larger conversation.”
Orantes felt strongly that one of the more important parts of the Day of the Dead celebration is the Day of the Little Angels, also called Day of the Innocents. It is a time when communities remember babies and children who have passed away. In the anthology Latina and Latino Voices in Literature: Lives and Works, the author Frances Ann Day describes the tradition: “On October 31, All Hallows Eve, the children make a children’s altar, to invite the angelitos (spirits of dead children) to come back for a visit.” People leave food and toys as offerings for the children’s spirits. The tradition has roots in both pre-Columbian and Spanish colonial history, and is also said to have derived from the biblical tale of Slaughter of the Innocents, the Old Testament narrative that details King Herod’s sweeping infanticide through Bethlehem.
Orantes wanted to acknowledge this specific day, which she feels honors traumatic loss. “This exhibit is about being a site for healing, and a place where communities can come together and mourn, but also to celebrate people’s lives,” said Orantes. “We also get to showcase the amazing work that MADRE does 365 days a year.”
MADRE helped Macias get back on her feet after losing the baby. The social workers sat with her in the days after she returned to her home in East Oakland. They accompanied her to clinic appointments. They held her when she couldn’t bear to look at Axel’s empty crib.
They also helped her through the anxiety she felt about the possibility of losing another baby. And in 2013, they were by her side when she gave birth to a healthy little boy named David.
Macias feels that her work will encourage dialogue, if only just for other mothers who are suffering as well. “Doing this is to help people see that they are not the only ones that this is happening to. They should know they are not the only ones going through this,” she said. “Tragic things can happen if you don’t share your feelings.”
The installation had a marked effect on visitors at the opening. One man stood in stunned silence before remarking on the tragedy of the experience; others clutched the hands of their children while looking through the boxes. Orantes was struck by a father who picked up his son and pointed to one of the boxes on the wall: “That’s your brother,” he said.
“That’s what the work is about,” Orantes said. “It’s about being a place where communities can come together to mourn, but also to celebrate people’s lives.”
MADRE was formed in 2006 by a group of health workers within the county’s public health department. Their goal was to reduce infant mortality and early childhood death within the East Bay’s Latina population through carefully monitored and consistently administered care. They would also provide grief counseling to women who had already lost a pregnancy.
MADRE addresses the multiple ways that women can experience the loss of a child, including fetal demise and neo-natal death. Alison Brooks, a clinical nurse specialist in the Newborn Intensive Care Unit at Alta Bates Hospital in Berkeley, explains the difference between these terms. “Fetal demise is a baby that dies before delivery, whereas neo-natal death is a baby that dies after being born. With fetal demise, there is no heartbeat at the time of delivery,” said Brooks.
There is no easy answer for what can cause fetal demise. Brooks said that it can sometimes be due to genetic abnormalities, but can also be totally spontaneous. “It could be profound cardiac abnormalities, it could be brain anomalies, it could be related to an infection or placenta problems, so the baby doesn’t get enough nutrients,” said Brooks.
Because the causes are so varied, it can be difficult for women and their families to accept. “One of the hardest things is when mothers are feeling their babies growing, and getting bigger, and kicking, and for us to tell them that they won’t live very long, it’s very challenging,” said Brooks. “With these families, they are not only planning for the birth of their baby, but the death of their baby as well.”
MADRE works with each mother for a year or more, depending on her circumstances and medical or psycho-social history, said Isabel Aguilar, a lead medical social worker for the program. If the client goes on to have another pregnancy, they work with her through the pregnancy and up to two years after the birth, depending on the health of the baby. “We prepare the woman so that she doesn’t have the same experience with the next pregnancy,” said Aguilar.
The loss of a baby can be physically taxing on women, too. Aguilar said that in late-term losses, the women need to go through labor, either naturally or via Cesarean, which can leave them with pain and stitches. Natural births can tear the perineum. Many women will also have developed breast milk, which needs to be expelled.
Aguilar said the physical pain is compounded by the reality that the women are leaving the hospital with their arms empty. “They tell me that when they hear the cries of the baby, or when they go to the post-partum appointment and see kids, that is very painful for them.”
Workers at the county health department saw a particular need among the Latino community, its third largest demographic group after white and Asian residents. Latina women experience infant mortality outcomes at rates similar to the national average. For fetal demise, that’s 5.1 deaths per 1,000 births. For neo-natal deaths and infant deaths, it is 3 and 4.1 deaths per 1,000 births, respectively. Aguilar said that the need for the program arose out of the size of the Latina/o population, and the challenges people faced in navigating the healthcare system, rather than a disproportionate death rate. “There was a gap in programs serving this population,” she said.
Originally from Guatemala, Aguilar began working with Alameda County when she arrived in the United States, first with the county’s election board, and then as a social worker with infants and pregnant women. She was recruited to join MADRE in 2006 and started to help develop the specifics of the program.
Most days of her are spent in the field, shuttling between clients’ homes and doctors appointments. She is soft-spoken but an emotional rock, always comforting her clients with a soft touch of her hand. She carries a small flip-phone that buzzes constantly with calls from clients, clinics and insurance providers.
Aguilar said that first and foremost, MADRE exists to give mothers grief support after they lose their baby, or prior to an anticipated stillbirth. They accompany women to the doctor to ensure that they understand their diagnoses, and advocate to obtain interpreters for clients who don’t speak English. If the client has a condition, they help her understand it and take her medication, and help her figure out what will be required for her care. They refer the women to specialists if they need special treatment. The program also communicates with health insurance companies on behalf of the mothers. They help them navigate state and federal programs. “Anything that they need,” said Aguilar.
Most of MADRE’s clients come to them through hospitals, clinics and healthcare providers. Sometimes, women who have gone through the program refer friends, family and acquaintances. At the beginning, they did local outreach to build their client base, but it soon became unnecessary. The demand for their services was high, and Aguilar and the staff quickly became busy.
Aguilar said that MADRE helps women alleviate pain that often goes unacknowledged by their families and friends. “People don’t pay much attention to these mothers who lose their babies, whether they are newborn or in the womb,” she said. “People don’t recognize it. With fetal demise, people say, ‘Oh, you can have another one.’ But some women can’t, and the grief is very hard.”
Ingrid Escobar is from Guatemala, and has lived in the United States for nine years. She joined MADRE in 2008, after losing her baby when she was eight months pregnant. Escobar didn’t know the baby was sick. “I lost him inside of me,” she said. “I had him like a normal baby, and then he wasn’t alive. That hurt me so much.”
The hospital referred her to MADRE, who helped Escobar find psychological programs to cope with the loss of the baby. Like many women, Escobar suffered from depression in the wake of the loss, and struggled to shake the guilt that the death was somehow her fault. Mostly, she wondered why this was happening to her.
In addition to psychological support, the program helped her with doctors’ appointments. They helped Escobar translate English documents that she couldn’t understand. When Escobar became pregnant again with her now two-year-old son Marvin, MADRE helped her throughout her entire pregnancy. “I don’t know what I would have done without the program,” Escobar said.
MADRE also helped Escobar connect with other women who had gone through similar experiences, which made it easier to cope with her grief. “You think you are the only person this is happening to,” said Escobar, “but when you hear other people’s stories, it motivates you to get better.”
Most of all, she was simply grateful that she had someone to listen to her. “The beautiful thing about a program like this is that it helps you move forward without forgetting your baby, which I think is very necessary,” she said.
Since joining MADRE in 2008, Escobar has participated in their community altar celebration—first with her husband and eldest daughter, and now with Marvin. This year, Escobar made an individual nicho dedicated to the baby she lost. She included gifts from her baby shower and an ultrasound. Her daughter helped her figure out how to arrange things inside the frame.
Escobar loved seeing her nicho in the Oakland Museum exhibit, and knows it will help other women. “The pain of losing my baby comes every year” said Escobar, referring to the Day of the Dead, “but I will be able to help another mother by sharing. Your words can help another person going through the same thing.”
Celia Mendez, who was referred to the program in 2013, echoes Escobar’s experience. Mendez was eight months pregnant when she realized that her baby wasn’t moving. She went to the ER, where doctors told here that the baby had died. She had planned to name him Noe.
Mendez was new to Oakland, having recently emigrated from Guatemala. She has almost no family here. Mendez’s primary language is Mam, a Mayan language spoken regionally throughout Guatemala. She still struggles with Spanish, and that made it hard to communicate with hospital staff.
Mendez describes only wanting to sleep when the baby died. She didn’t want to talk to anyone. “I wanted to run out and see the baby again. I wanted to be with him,” she said. She said she couldn’t calm herself down until they buried him ten days later.
A social worker at the hospital referred Mendez to MADRE, and when she returned home, Mendez said the women from the program, one of whom speaks Mam, started checking in on her at home twice a week and taking her out to the park. Mendez said they helped her climb out of her sadness little by little.
“I don’t know how to read, so they helped me with that as well,” said Mendez. “It’s very hard going through this in a country that is not your own.”
Mendez is glad she joined the program, because she can talk to them about her feelings. She recently passed Aguilar’s number to friend who lost her own baby. Mendez smiles at the thought of being able to help her.
As a neo-natal nurse, Brooks sees that there is a particular need for programs like this in the Latino community, and very often refers her patients to MADRE. “I could not imagine what it’s like to navigate the healthcare system not speaking English, not having adequate health insurance, not understanding what we’re saying,” said Brooks. “Also, we’re telling women things they don’t want to hear, because it is so awful.”
Brooks said that the care that the women need goes beyond just language. “You need culturally-sensitive support. You can interpret, but that doesn’t mean that you’re actually meeting someone within their own culture. It’s a badly-needed program in the community,” said Brooks.
Brooks and Aguilar both mention that MADRE can’t keep up with the demand from the community. They take on as many clients as possible, but, with only three full-time social workers, they are sorely understaffed.
With group programs, like activities for Mothers Day and the Day of the Dead, the women can create a self-sustaining community support system so the women can help each other when MADRE’s social workers can’t be around.
“It’s hard to find support even if you are an English speaker, so it makes it more difficult for a woman who doesn’t speak English to find this support,” said Alicia Diaz, a licensed family marriage therapist who runs grief groups in the East Bay. “I can only imagine how painful and scary it is for them, especially not speaking the language,” she said.
Having run the only Spanish-speaking grief group in all of Alameda County, Diaz knows the importance of creating a grieving space for the Latino community. She started incorporating nichos into her practice ten years ago. Diaz also sits on the committee that puts together the museum’s annual Day of the Dead celebration. She said seeing the women’s work at the museum exhibit opened her heart: “I just wanted to cry. It’s by women just like me; all of these women are just like me. With the MADRE nichos, I know it is somebody’s heart that I am holding.”
Many of the women who found solace in MADRE have gone on to have other children, and have gotten through their pregnancies with the group’s help. In 2014, they helped Mendez through another pregnancy, starting with accompanying her to her doctors’ visits. This time, she gave birth to a healthy little girl, Maite, who is just now learning to walk.
On a recent weekday afternoon, Mendez gazes at Maite lovingly as she takes halting steps across the floor of their East Oakland apartment. Maite hands Aguilar and her mom some candies before settling into a deep nap on Mendez’ breast.
Mendez went to the exhibition opening with some of the other mothers. They talked about how nice it was to remember their babies. She describes making her own nicho with the help of her partner and nephew. Together, they drew little sleeping angels and a manger. “And clothes,” she adds. “Clothes I was going to put on my baby.”
Macias’ family also joined her at the exhibit opening. She describes her daughter Evelyn as having been particularly marked by the loss of the baby. After Macias gave birth to David, Evelyn would stand by his crib, just watching him breathe. She would run to her mother whenever her little brother fell into a deep sleep. “She was scared of losing him,” recalled Macias. “She would say, ‘I don’t want him to die.’”
Evelyn had come to the hospital to visit her mother after Axel’s death. She wanted to see her baby brother in the incubator, even though she knew he wasn’t alive. The hospital let her see him, and Macias recalled “the strangest thing happening.” As Evelyn looked at her brother in the incubator, she turned to her mother and said, “My baby brother is an angel.”
“She was such a sweet girl,” Macias said. “I said ‘Yes, your little brother is an angel.” Evelyn turned back to her and said, “No, really, he has wings.”
There is a hidden dedication in one of the nichos at the Oakland museum. It’s almost impossible to spot, glued to the bottom edge of one the shadowbox frames. Wedged in between two yellow crosses is a date and under it, a note to a baby girl, Maria Asunción:
03/24/2000 – 10/09/2000
Siempre estas en mi mente. Mi niña, te extraño.
“You’re always on my mind. My little girl, I miss you.”
Photos by Luisa Conlon. Interviews translated by Robin Simmonds.
Corrections: On December 7th, corrections were made to clarify the services MADRE provides, as well as anatomical details about childbirth.