When Emma Ping was 35 weeks pregnant with her fifth child, Selah, she thought she was in the clear. After suffering a miscarriage months earlier at six weeks pregnant, she had been nervous when she conceived again. But deep into her third trimester, her odds for a healthy birth were overwhelmingly positive.
Then, at 36 weeks, Selah died in utero when her umbilical cord wrapped twice around her neck. Ping joined the countless mothers throughout history left swollen with milk and yearning for an alternate reality after delivering a stillborn child.
There was, however, at least one small comfort amid her nightmare. Ping and her husband did not have to rush immediately into heart-wrenching decisions like choosing a headstone, a song for the funeral, or a tiny burial outfit from among the baby shower gifts.
Instead, the Pings were offered something called a CuddleCot, a miniature cooling unit disguised as a bassinet. Rather than whisk away Selah’s body for physical preservation, the hospital allowed them to keep their baby at the bedside for up to 48 hours in the cot, offering a chance for her siblings, friends, and family to hold and meet her.
In past years, and in many hospitals still, the baby would have been relegated to a distant morgue. Selah’s presence was a salve for Ping, who described a night when she woke up traumatized in her hospital room at 2:30 a.m. and “could not bring myself to turn over and turn away from her.”
She counts it a great comfort just to “have that experience that people have when their babies are born living, so the baby is with you all the time and you can take care of them, dress them, take photos, spend that time with them.”
It was not that long ago that a stillbirth—the loss of a fetus after 20 weeks—was widely seen as something to be forgotten as quickly as possible. In the 1960s and ’70s, women normally did not see babies who died before or shortly after birth; the babies were quickly carried away, leaving an empty uterus and an eerie silence. There were often no death certificates, funerals, gravestones, or photos. It was as if the child had never existed, and hospitals attempted to resolve the incidents quietly.
But many today are far less averse to grieving death in the delivery room. Hospitals are increasingly offering parents options for mourning a child lost after 20 weeks, spurred by a cottage coalition of volunteers, nonprofits, and boutique companies promoting the idea of “perinatal hospice.”
“The loss of a preterm baby is devastating, and our culture’s ambiguity about the personhood of the unborn adds to the difficulty and complexity of this specific kind of grief,” said Tish Harrison Warren, a writer and Anglican priest who has spoken out about the search for her and her child’s dignity after her miscarriage.
Grieving stillborn children may, in fact, be the one area where Americans’ divided views on in-utero personhood are finding common ground.
Overall, Americans have remained split over the morality of abortion in the decades since Roe v. Wade. But polls have shown that a majority of Americans are uncomfortable with abortion after 20 weeks and that an overwhelming majority disapprove of it in the third trimester. Those sentiments have shaped a movement to honor the lives of infants that almost were. The movement has, at times, been an overlooked skirmish line in the fight to define when life begins. In the early 2000s, pro-choice groups lobbied against “Missing Angels” bills that passed in more than 20 states and granted birth certificates to stillborn children. And legal skirmishes continue around whether a stillborn fetus should be considered a full-fledged child in medical malpractice cases.
“From a societal perspective at large, a lot of people don’t see embryos and fetuses in the first trimester as fully human,” said Christina Francis, a board-certified ob-gyn and chair of the board for the American Association of Pro-Life Obstetricians and Gynecologists (AAPLOG). Many women “feel their first trimester miscarriages very deeply, but from a practical standpoint, the longer she carries that baby, the more connected she will feel.”
Every year, an estimated 24,000 women in the United States have a stillbirth, and at least 10 to 15 percent of all pregnancies end in miscarriage (before 20 weeks). According to some estimates, up to a quarter of pregnancies will result in miscarriage.
“Miscarriage is a frequent and normal part of the human experience, but we rarely talk about it, so a woman going through one often feels like she, or she and her partner, are alone,” wrote New York University professor Amy Webb in The Atlantic. Webb suffered eight miscarriages while continuing to work professionally. Colleagues were unaware of her losses.
The undervaluing of young lives has a long history. Ancient Roman culture, known for widespread infanticide, afforded no mourning period for children who died in their first year. Children who died before age ten received less mourning time than adults. In ancient Egypt and many other cultures, infant death was so common that parents often didn’t name children for months. This practice has maintained its hold today. One academic study found that, between 1800 and 1979, one in five children who died in the US before age one remained unnamed.
Jewish tradition, for example, has responded to high rates of infant mortality in recent centuries by relieving parents and the community of their mourning duties. In many cases, while the infant was buried, grieving families didn’t know the location of the grave and didn’t hold a funeral or observe the week of visitation. In the past 30 years, especially as rates of stillbirth and neonatal death have decreased, some Jewish traditions have developed more detailed rituals on observing mourning and burial. (Israel’s health ministry only issued more formal regulations for infant burial in 2017, according to The Jerusalem Post.)
Even as recently as the late 1980s, mothers with babies who died during pregnancy were urged to quickly forget their experience. Lindsey Wimmer, executive director of the Star Legacy Foundation, which advocates for families who have experienced perinatal death, said parents sometimes didn’t name their children or even see them—and were often told to “move on and have another baby.”
But stillbirth rates have dropped dramatically in the second half of the past century. In 1931, stillbirths totaled 3.8 of every 100 births, according to the CDC. By 2019, stillbirths in the United States had dropped to 1 out of 100 births. How much of that drop is due to legalized abortion is debated, since terminated pregnancies are not counted in prenatal mortality statistics. But it’s clear that transformative advances in medical science, like prenatal testing, early ultrasound, and advanced neonatal care, have led to healthier babies. Plummeting stillbirth rates makes the relative rarity of losing a child after 20 weeks culturally more acceptable and logistically more practical to mourn it for the tragedy that it is.
“In the mid to late ’80s, there was a paradigm shift,” said Wimmer. In 1988, President Ronald Reagan acknowledged that shift by declaring October as Pregnancy and Infant Loss Awareness Month. “There was a general movement to encourage families to meet their babies, take photos, or have a memorial service.”
Though a cultural transformation has been mounting for years, the past decade has brought especially dramatic shifts. Of the more than 2,000 US hospitals that offer obstetric care, more than 300 now have perinatal hospice programs and technology that gives families more time with their deceased infants. Perinatal hospice often includes palliative care and bereavement counseling in cases of a fatal pregnancy diagnosis. Though some doctors do counsel women to abort, many women choose to care for and comfort their children for as long as they survive after birth.
Francis, of AAPLOG, said most doctors aren’t aware of perinatal hospice or don’t offer it as a viable option when pregnancies go wrong. She said mothers have told her they would have chosen that avenue over abortion had it been presented to them.
One way that some families cope with their loss is through portrait sessions with their stillborn infants. Now I Lay Me Down to Sleep, perhaps the best-known group focused on stillbirth photography, began in 2005 when Mike and Cheryl Haggard lost their newborn baby, Maddux, to a condition called myotubular myopathy. After Cheryl’s disappointment with her personal photographs, the couple called a professional photographer to capture their time with Maddux. “Seeing the images of Maddux, I am not reminded of the pain and sadness of that night; I am reminded of the beauty and blessing Maddux continues to be in our lives,” Cheryl said in a video posted on her website. The Haggards’ organization has paired more than 40,000 families with volunteer photographers.
The idea for CuddleCots, like the one Ping used, also came from a grieving mother. CuddleCot founder Steve Huggins ran a business in the United Kingdom that designed a cooling system for deceased obese patients. He was caught off guard when a mother requested a special unit for her baby. Huggins designed a custom unit, and new orders poured in as word spread on social media. Since he launched the CuddleCot in 2010, Huggins has sold more than 1,100 units in the US, mainly for hospital use but also for some parents who take deceased infants home for several days. Priced around $3,000, most CuddleCots are purchased and donated to hospitals by families who found solace in using one themselves.
“We had no idea there would be this much demand for it,” Huggins said in an interview. “We did some testing in local hospitals, and it soon became clear that this was a product that was going to work.”
Mothers, families, and individual hospital staffers like maternity nurses have largely led the way in persuading hospitals to alter how they deal with infant loss. Families hear about a CuddleCot, hospice program, or memorial service from peers and then bring the idea to the doctors or nurses caring for them.
“Just like families who lose a child that’s [age] eight or ten, part of that healing process is being able to see a child after they have passed away for it to kind of sink in or for closure,” Francis said. “That is the only time they are getting with that child, and it’s a good thing that families aren’t being rushed.”
The Pings have dedicated three Cuddle-Cots in Selah’s honor, and they donate “Selah Boxes” to hospitals for families who lose a child. The keepsake boxes contain a handmade blanket for the baby as well as a journal and handwritten note to the family.
Like Ping, many local groups nationwide have found ways to support grieving families through sewing burial gowns or writing original poetry. Claudette Roberts is a longtime member of Heaven’s Handiwork, a sewing group run out of White River Christian Church in Noblesville, Indiana. She and about 25 others have been meeting twice monthly for years, crafting blankets, quilts, and hats for nursing homes and other nonprofit ministries. They recently added to their work the items that go in Selah Boxes. “There are some members in our group who have experienced loss through miscarriage or stillbirth, and that’s one reason [we were drawn to it],” Roberts said. “God has given us the gifts to make these and be a part of this ministry that is so wonderful and touches so many families in such a special way.”
Dede Flaherty is a Christian and a pioneer in the perinatal hospice movement. A bereavement director at Riverview Hospital in Indianapolis, Flaherty has worked for several decades as a labor and delivery nurse. She never intended to take on bereavement work, but after interacting with families, she saw a need and developed the position at her hospital.
“It was tough at the beginning,” said Flaherty, whose first projects included purchasing a bench for a healing garden outside the maternity ward so families could have a dedicated space to grieve. “I had a few barriers to go through, just letting the administrators and doctors know that it’s okay to talk about infant loss.” Her position includes coordinating counseling sessions, organizing support groups, and providing resources for funeral planning and grief education, all of which were previously absent. Flaherty said the scrappy, unofficial nature of her role—a side hustle to her full-time job as a nurse—is common at other hospitals as well.
Some hospitals, however, are eager to implement progressive care that includes bereavement services and better mental health care options. Community Hospital North in Indianapolis began embracing a comprehensive program for late-term loss in 2018. Amy Wire, a vice president overseeing women’s services, said hospitals may shy away from this kind of care due to cost barriers or “a knowledge deficit.”
“They may not be aware of the impact it can make to a family that is experiencing a loss, to get that time with that baby that is so limited,” Wire said. Community Hospital North began regularly gathering bereavement coordinators from its five hospitals to exchange ideas and best practices. Each hospital has a CuddleCot.
Wimmer, of the Star Legacy Foundation, said cost is a huge factor in the slow embrace of programming or education—thus, most resources are donated by families. “A lot of hospitals are not willing to put that kind of money into a thing that hasn’t been tested scientifically” for long-term benefit, Wimmer said. “It’s extremely rare for medical school and nursing programs to have perinatal bereavement care or principles as part of their training.”
Wire said some hospitals may also worry that the extra care could “create a struggle for nursing staff.” After all, bereavement service goes beyond medical knowledge into time-consuming, uniquely sensitive, and comprehensive patient care.
Brooke Martin is an Indianapolis news anchor and mom who lost her baby, Emma, in early 2019 to anencephaly, which causes an underdeveloped brain and skull. She went public with her story and hosted a ceremony at a church, inviting anyone who had ever lost a child to honor him or her there. The response from women across generations was overwhelming.
“People would write and say, ‘I am 83 years old,’ or ‘I am 75, this is the first time I have ever written my child’s name. . . . I can’t tell you how much healing this has brought to see them recognized,’ ” Martin said in an interview last year.
Research suggests that perinatal care can lead to better mental and spiritual health for parents following a loss. Everyone CT interviewed, from veteran nurses to spiritual leaders in health care, agreed that the changing culture around infant loss has been positive.
A few hospitals even offer grievance ceremonies for patients who lose their babies before 20 weeks. Flaherty followed the example of bereavement nurses at larger hospitals and began coordinating such ceremonies for her families.
For babies lost later, some churches host celebrations of life, drawing hundreds of mourners—friends, family, and community members standing in unity. These services are similar to funerals and often include gospel songs, Scripture reading, short sermons, and dedications from family members.
“Those of us who affirm the value and dignity of children from conception have a responsibility to support families as they mourn,” said Warren, the priest. “Lending rituals and practices like funeral services, prayer, and burial services is one way the church can do this, but certainly not the only way.”
Robert Lyons, a Catholic priest who has worked as a health care chaplain in Indianapolis for 20 years, said the spiritual healing that comes from time spent with stillborn infants—and time spent memorializing them—can be profound.
“It gives people an opportunity to develop their own context and tell their own story,” Lyons said, “and to invite God to be part of that experience with them in a very natural way.”
Cathy Arnett, a mom in Bloomington, Indiana, who lost her first child to stillbirth more than 20 years ago when she was 38 weeks along, taught her two daughters to remember the older brother they never met. “At school, when teachers asked about siblings, [the girls] would always talk about their older brother in heaven,” Arnett said. “And every year, we celebrate his birthday.”
Ericka Andersen is a freelance writer and mother of two in Indianapolis. She is the author of Leaving Cloud 9 and host of the Worth Your Time podcast.
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