Courtesy of TheAtlantic.com | By Sarah Zhang | Illustration by Katie Martin/The Atlantic | Originally Published 02.12.2020 | Posted 03.14.2020
AARHUS, Denmark—When Ane Petrea Ørnstrand’s daughter was stillborn at 37 weeks, she and her husband spent five days in the hospital grieving with their dead daughter’s body. They held her and cried. They took photos. They welcomed family and friends as visitors. And then they brought her home for four more days, where she lay on ice packs that they changed every eight hours.
If you had asked Ørnstrand before she herself went through this in 2018, she might have found it strange or even morbid. She’s aware, still, of how it can sound. “Death is such a taboo,” she says. “You have to hurry, get the dead out, and get them buried in order to move on. But that’s not how things work.” In those moments with her daughter, it felt like the most natural thing to see her, to hold her, and to take her home. The hospital allowed—even gently encouraged—her to do all that.
This would have been unthinkable 30 or 40 years ago, when standard hospital practice was to take stillborn babies away soon after birth. “It was ‘Go home and have another and forget about it,’” says Dorte Hvidtjørn, a midwife at Aarhus University Hospital. Since then, a revolution in thinking about stillbirth has swept through hospitals, as the medical profession began to recognize the importance of the parent-child bond even in mourning. These changes have come to American hospitals, too.
But Aarhus University Hospital, where Ørnstrand gave birth and where Hvidtjørn works, is unique even in Denmark for having a unit dedicated to perinatal loss, the medical term for when infants die shortly before or after birth. Whereas other hospitals in Denmark—and often in the U.S.—might discharge patients hours after a stillbirth, patients at Aarhus can stay as many days as they like. The two-room unit is separate from the maternity ward, where grieving parents might overhear crying newborns and celebrating families. When I visited last month, Hvidtjørn pointed out the double beds that sleep both parents as well as the lamps and wall art that softened the hospital setting. “We try to make it very homey,” she says. Some patients, like Ørnstrand, even choose to take their infants home. Here, midwives give the parents time and space to say hello and then goodbye.
Over the course of the 20th century, grieving a dead infant went from a common experience in Western countries to a rare one. In the U.S., one in 10 infants died before the age of 1 at the beginning of the century. By the end, that number had dropped to fewer than one in 100. Stillbirth rates fell too. These statistics also coincided with a subtle but profound shift in the relationship between parent and unborn child. “The degree to which there’s attachments to the baby in utero and at birth has to do with the motivation and expectation that the baby is going to survive,” says Irving Leon, a psychologist and the author of When a Baby Dies: Psychotherapy for Pregnancy and Newborn Loss. And as parents more and more expected their unborn children to survive, they bonded more deeply with them before birth.
Meanwhile, newly widespread ultrasounds in the ’70s made it possible to visualize the fetus, allowing parents to grow further attached to a child they could now see. And psychologists began emphasizing the importance of the mother-infant bond immediately after birth, establishing the norm still followed today of mothers holding newborns skin to skin. When parents lost a child through stillbirth, however, the medical system kept adhering to what one critical psychologist vividly called the “rugby pass management of stillbirth”—as in, the stillborn baby was passed back like a rugby ball and whisked out of the delivery room. The parents never saw the baby, as if not seeing meant not needing to grieve. Some bereaved parents found their feelings at odds with this view.
“I sometimes tell my students that if you can find a textbook from the 1970s that talks about perinatal loss … whatever it says, do the opposite,” Leon says. “Literally, there’s been a 180-degree shift.” Instead of pretending the baby never existed, hospitals today usually offer mementos such as photographs, locks of hair, and footprints. Some ask parents whether they want to hold or see their child. Psychologists now emphasize the importance of getting to know the baby, even in death. “When you have someone who died that you know, you have memories: the sound of their voice, conversations, their favorite chair. When you have perinatal loss, you really have nothing,” Leon says. “Seeing the baby allows you to begin to bond and develop memories, which grieving is based on. It defines the baby as a son or daughter.”
This is a guiding principle at the perinatal-loss unit in Aarhus, too. The midwives encourage parents to take photos, invite friends and family, even take the child home if they like. “It’s so important for parents to experience that they are actually parents,” Hvidtjørn says. This extends to the birthing process itself. The perinatal-loss unit only admits women in week 14 of pregnancy or later. At this point, mothers here are encouraged to give birth vaginally rather than go through surgery.*
For Ørnstrand, who found out that her daughter had died after the baby stopped moving at 37 weeks, the idea of going through labor to give birth to a dead baby was initially unfathomable. She demanded a C-section. She just wanted it all to go away. “It’s easier to just take the baby out,” she remembers thinking at the time. “I don’t want to be confronted with it.” This is very common among mothers, Hvidtjørn says, but she and the other midwives still encourage vaginal delivery, both to avoid major abdominal surgery and to reaffirm their patients’ identity as parents in the grieving process to follow. (In Denmark, midwives, rather than doctors, attend most births, and Caesarean sections are generally not as common as in the United States.)
Ørnstrand ultimately did go through labor to deliver her daughter. Her husband cut the umbilical cord. “It was quite a beautiful experience for the both of us. Terrible but beautiful at the same time,” she says. “I got to experience a lot of things which normal parents of living babies get to experience.” She found it empowering. Of the 600 sets of parents that have been in the perinatal-loss unit in Aarhus, according to Hvidtjørn, only one ended up getting a Caesarean section. “They are very proud,” she says of mothers who go through with vaginal delivery after perinatal loss. “It’s like, ‘I couldn’t give anything else, but I could give birth to my child and I did that as a mother.’”
After birth, Ørnstrand remembers being scared to see her daughter. She and her husband made a pact that the midwives would tell them how the baby looked first. (Fetuses that die in the womb can sometimes have discoloration and maceration of the skin, and those that are younger than 20 weeks are very small and skinny.) Ørnstrand’s daughter looked normal, but she still remembers being reluctant, in the minutes after birth, to hold her dead daughter. “I think I was really confused and I couldn’t really wrap my head around that she was the child I had carried. It was weird for me,” she says. “But actually just a couple of hours later when I came to, I became just exactly the same way as any other parents and I wanted to hold her and wanted to kiss her and felt very protective of her.”
After five days at the hospital, Ørnstrand first went home without her daughter, but she became so distraught, feeling she had left her child, that she went back to the hospital the next day to hold her. A midwife said she could take her home. “It was a hard decision because when you look at it outside, we were like, ‘You don’t take dead babies home. That’s kind of weird,’” she says. But once her daughter was home, it felt right. Not every woman experiences stillbirth the same way, but in the course of her own birthing experience, Ørnstrand found herself pushing up against the death taboo—and then pushing past it.
In 2015, Hvidtjørn and her collaborators began collecting data for a study of grief after perinatal loss in 5,000 participants across Denmark—the largest cohort ever for this kind of study. Ørnstrand was among the participants. And one of the goals, Hvidtjørn says, is to follow outcomes specifically for parents who have been through Aarhus’s perinatal-loss unit.
In the U.S., exact practices around stillbirth can vary widely depending on the hospital or even “who happens to be on staff that day,” says Joanne Cacciatore, who in 1996 founded the nonprofit MISS Foundation for families that have lost children and who has counseled many bereaved parents since.
One of the more controversial issues, says Katherine Gold, a family physician at the University of Michigan, is whether parents should hold their infants after stillbirth, due to fear it would intensify grief. A 2016 survey conducted by Gold and her colleagues found that of 377 mothers who experienced perinatal loss, 90 percent held their infants after birth. Most of the mothers who did not said they were told they were not allowed; half of them regretted not being able to do so. (Of mothers who did hold their child, 1.5 percent had regrets.) On the other hand, some hospitals have started offering CuddleCots, essentially a crib with a refrigerated unit. The cooling slows down the changes that happen after death, allowing parents to bring the child home and extending the number of days they can spend with their deceased baby. The Aarhus University Hospital got a cooling cot in late 2018, too.
Even as hospital practices have widely changed around stillbirth, a broader culture of discomfort with stillbirth remains. In 2012, when former Senator Rick Santorum revealed that he and his wife brought their son home when he died shortly after birth, it was derided as “weird” and “horrifying.” And several families who shared photos of their deceased infants on Facebook have found that their photos were reported for violating community guidelines.
Ørnstrand didn’t quite understand the grieving process either until she went through it herself. She reflected on the things she did, which she was grateful to have done: going through labor, holding her daughter, taking her home. “If someone had told me about it and I hadn’t lost a child, I would think they were completely insane,” she says. The grief doesn’t entirely go away, but she cherishes those memories now.
Last year, she gave birth to her second daughter, whose due date was exactly one year and one day after her first daughter’s. This coincidence caused her considerable dread and anxiety throughout the pregnancy, but everything went normally this time. When her second daughter is old enough, Ørnstrand will tell her about her older sister. She won’t forget.
On the cold January day I was in Aarhus, Hvidtjørn pointed out the hospital windows to a dogwood tree in the courtyard. Its branches hung wide and low. She planned to make it a memorial tree, where parents of the perinatal-loss unit can hang a small memento with their child’s name. The idea came from Ørnstran
This article originally stated that at 14 weeks a child that had died in the womb must be delivered as a living child would. The perinatal-loss unit at Aarhus University Hospital encourages vaginal delivery, but surgical options also exist.
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SARAH ZHANG is a staff writer at The Atlantic.