Public Grieving

11.04.13

Parents of Stillborn Babies Post Hundreds of Memorials to YouTube

A century ago, stillborn babies were often photographed to preserve at least a trace of their brief existences. Now the practice has migrated to YouTube.

Jeremy and Carey Bear’s triplets died the day they were born. Carey Bear, 36, was only 22 weeks pregnant when the bag of water surrounding Baby A broke—too early for him to live outside her womb. Interventions to delay failed. Labor was chaotic and all too quick. Before the Long Beach, California couple could mourn the first baby, another was coming, and fading, and then the next.

Picking up a camera was last thing Jeremy Bear would have thought to do in those terrifying moments. But he had been blogging about the pregnancy and when premature labor started, he posted an entry titled “Prayer/Panic.” A woman who had lost children of her own responded in an email, “If it goes badly, even though you won’t feel like it, you need to take a lot of photos.”

Jeremy Bear says he hated taking them. “I just wanted it to stop. I just wanted to be past that moment,” he says. But he took more than a hundred that day.

He put his pictures into a slideshow for a video memorial to play at the funeral. Footage of the triplets after their death was taken with a cell phone camera. The shaky two-minute video shows Rudyard, Desmond, and Oscar, dressed in tiny bonnets, wrapped in blankets. “These are my sons. They passed away this morning,” Jeremy says off camera. He later posted it to his blog via YouTube with a disclaimer that it contains images of their bodies: “If you’re disturbed or offended by this sort of thing, please don’t feel any obligation to watch.”

Bear’s video is shocking for the unprepared who stumble upon it. Now that we’ve relegated the process of birth and death to institutions, squirreling them away to the private areas of hospitals and funeral homes, we manage to effectively avoid images of the dead altogether. Dr. Ingrid Fernandez, a visiting lecturer at Stanford who studies death says, “In the 19th century, it was common by age 20, you would have seen five or six deathbed scenes.” But now, she says many people are well into adulthood before they see a dead body. In Loss and Bereavement in Childbearing, Rosemary Mander, emeritus professor of midwifery at the University of Edinburgh, likens Western attitudes toward death to Victorian attitudes toward sex: it is “the ultimate unmentionable.”

Witnessing the death of a baby effects a special kind of heartbreak that throws off all sense of how the world is supposed to work. “When we’re confronted with the fact that babies and children die, our natural inclination is to avert our gaze … It’s too much,” says Dr. Joanne Cacciatore, an assistant professor at Arizona State University who studies perinatal death.

Upsetting as it may be, a simple search shows it’s no anomaly. For reasons difficult at first to comprehend, grieving parents are increasingly taking YouTube up on its invitation to “Broadcast Yourself.” Hundreds of memorials similar to the Bears’ have been uploaded and made public. Click on one and the right-hand carousel of related videos fills with a dozen more just like it. And increasingly, parents who have lost children are reporting that sharing the experience, images and all, helps them understand their grief and affirm the existence of the babies they’ve historically been told to forget.  

Parents who have lost children often don’t know anyone else who can share in their experience.

Sharing his children online is certainly something that is important to 37-year-old Bear. “When we’re able to write about them, or link to them or put something on Facebook,” he says, “it may not always be an easy thing for people to see, but as a parent, that’s all we’ve got really.” He concedes that if the children in his video belonged to someone else, their images would upset him. Even now, he says it’s too difficult to watch videos posted by other users. “It’s just disturbing. It’s just visceral,” he says. 

So who would watch? And why? Judging by the flooded comment sections, many viewers are “civilians”—the word bereaved parents use for outsiders who’ve never lost a child—who come across the videos unintentionally. These passersby are virtually stumbling into strangers’ delivery rooms and operating theaters and staying to relay their condolences. “I am in total disbelief that I found this beautiful tribute to your triplets… through tears I am writing this,” one comment goes.

Others are grieving parents themselves. “I went into preterm labor at 22 weeks with my son… I hope one day we both can have healthy babies,” a woman writes. Jeremy Bear says they’ve received comments like this—online and in real life—from people who credit the video with helping them deal with their own anguish.

The videos receive some negative responses, too, though they are less common. Besides the usual trolling comments (“go choke on your grief,” “caskets for sale”), there is a fair amount of anger about what some people consider the spectacle made over the death of a child (“This does NOT belong on youtube”).  

***

Stillbirth is relatively—and increasingly—uncommon. About one in 160 pregnancies in the U.S. end in stillbirths—26,000 each year. Fifty years ago, the chance (PDF) of having a stillborn child was two and a half times greater; roughly one in every 65 births. Because of these advances, parents are less likely to know the tragedy of losing a child before it can live. But for the unlucky ones—and it truly feels like random luck sometimes since the causes of many stillbirths are unknown—these medical gains can mean isolation. Parents who have lost children often don’t know anyone else who can share in their experience.

Bereaved mothers report overwhelmingly that they feel alone and unable to share their feelings of loss. Only 26 percent of Americans affected by stillbirth say mothers “always or often” receive “undivided support” for her loss, according to a global study published in The Lancet in 2011. And 54 percent said the stillborn baby was perceived as a taboo subject in the community. 

Grief hasn’t always been such a private affair. Tangible effects—locks of hair, photos, and other personal objects—have long been collected as a way to remember the dead. Well into the 20th century, people in the U.S. died at home. The viewing of the body was done at home, sometimes over several days. Until Kodak put a camera in practically every middle class house, professional photographers were brought to the homes of grieving parents to take pictures of dead children and infants. The post mortem photographs were sent to relatives who couldn’t make the funeral services, but they were also routinely displayed on the family mantel, since they were often the only photograph of a child a family had. In the latter part of the 19th century, death photography grew enormously popular. These keepsakes acted not only as a memorial to the individual, but as a reminder of the inevitability of death itself, as a memento mori (Latin for “remember that you will die”). 

Advances in medicine and fewer deaths, coupled with the ubiquity of family photographs, made post-mortem photography less important, and the practice dwindled. But it never disappeared, certainly not in families with stillborn babies.

The overwhelming majority of grieving parents want these “tangible physical mementos, [to] remind them that their child lived and existed and matters,” says Dr. Cacciatore. But parents aren’t just taking the photos and making memories. Posting them to YouTube is a new—and unusual—normal, and one that “we may have created ourselves,” Cacciatore says. She says what might seem like another example of Internet over-sharing is actually a pushback from parents, responding to a medical profession that denied the very existence of the babies they lost and treated mourning mothers as hysterical.  

“These babies, much loved and wanted, have been historically marginalized,” Cacciatore says. As recently as 40 years ago, she says, when a baby died, hospital staff would rush the body out of the room. Most mothers never got to hold or even see their child. The baby was referred to as “it,” and no one mentioned ‘it” again. Remains were classified as “dead human tissue” and disposed of as clinical waste, according to a 2007 article in Visual Studies. By the time the mother came home, the nursery had been disassembled and the last nine months were put out of memory.  

The medical profession began improving the way it handled perinatal death in the 80s, around the time Dr. Elisabeth Kübler-Ross, hospice care pioneer and inventor of the five stages of grief, changed the way we think of death and dying. Based on her recommendations, bereavement teams first appeared in other countries, and then caught on in the U.S.  By the 90s, hospitals were giving women the chance to see and hold their babies after death. Hospitals now encourage parents to interact with the dead body. Most offer photography services or referrals to organizations such as Now I Lay Me Down to Sleep (NILMDTS), a nonprofit that provides free portraits to families. Hospitals make mementos for parents to take home: plaster molds of tiny hands, footprints, hospital bracelets.

State law is also catching up. Around 34 states now offer certificates of birth along with death certificates to parents of stillborn babies. Not having birth certificates for his triplets is something that is still especially difficult for Jeremy Bear. “That the world recognizes and documents their death, but not their life… it’s not fair,” he says.

Documenting the life of a person who lived for so short a time in a way that’s comfortable for the living is tricky. Tribute videos record the brief lives of the stillborn the way most parents do their living children: by posting their images onto social networking sites. But a problem remains. Death was once seen as a rite of passage and the desire to record it was deemed natural. But now having photos of the dead feels “very creepy,” says Stanford’s Dr. Ingrid Fernandez.

And we might just forfeit something in that divide we’ve chiseled between the dead and the living. The body, after death, Fernandez says, can serve as “a marker of our common vulnerability in the world.” When the only bodies we see are the ones used as props in ubiquitous TV and movie violence, she says, “we lose the acceptance of death not as a completely negative thing, but as part of the life cycle. As something that can be remembered and talked about.” 

But do these online expressions of mourning go too far? The Internet as we are often reminded, is permanent. And so too, possibly, is the heartbreak for parents who are constantly sharing their memento mori, what Nietzsche called the “torturing thorn,” on the Web.  

Chrissy Dyess, 38, of Denison, Texas, watched the video she made for her son, Spencer, “over and over” for the first few months. Backed by a Christian rock ballad, a slideshow flips through photos of Spencer after he died, dressed in a baby blue hoodie, an “I Love My Mommy” bib, and plush red pants. His tiny body is shown being held by tearful family members, then alone in powder blue satin coffin.

Even seven years later, Dyess says she watches it again when there are new comments. The video has been seen over 700,000 times and at least one person leaves a new comment every week.

Some experts argue that these online remembrances can, in fact, prolong grief rather than alleviate it. One such study published in Health Sociology Review argues that the memorials are potentially problematic. The creation and existence of them might strengthen the child to parent connection, but, it says, “by enabling the deceased to persist, parenting to continue, and grief to be continually communicated, acknowledged and legitimated within a community of bereaved parents and a wider public, the Web affords an on-going grief that is unhinged partially from longstanding ideas of ‘closure,’ privacy, and a separation of the living and the dead.”

For Dyess, the idea of “healthy” grieving is misguided. Well-intentioned advice to “move on” or find closure, she says, couldn’t heal her. Instead, she credits her strength to the making, sharing, and continued watching of her video. “I think if I had just put him away, then I’d be a much less happy person,” she said in an email.

But not all parents who post are looking for a way to heal themselves. Videos uploaded by some mothers and fathers are less of a reach out than a simple continuation of their quotidian Internet habits.

Marcia Hale, mother to a 3-year-old son and 5-year-old daughter in Pittsburgh, says she posts her photos on Facebook and videos on YouTube as a means of storage and she just kept the memorial video for her son, Shiloh, public so her large extended family could meet him.  

Shiloh was born alive at full-term, but because of medical defects, could not live outside his mother. At around 26 weeks, Hale, 34, found out that her baby had Down syndrome, holes in his heart and an abnormality that caused his internal organs to lay on top of each other. The other organs crowded his lungs and instead of growing into sponges, they resembled rock hard peas. Doctors told her that when he was born, her son would be unable to breathe on his own and there would be no medical remedy.  

Morally opposed to an offered abortion, Hale decided to see the pregnancy to term. “I knew that he was definitely going to die, and I knew that my time was limited,” she says. “But he’s still my kid. I wanted to see his precious little face.”

Shiloh was born like Hale’s other children, via C-section. Arms and legs numb, Hale wasn’t able to hold her son in his only moments, but had them recorded. “I didn’t just want a picture of him. Sometimes when you just look at a picture, it seems like a distant memory, like it didn’t really happen,” she says.

Shiloh’s birth, brief life, and death are on YouTube. Struggling to breathe and cry, he is wrapped in a blanket and placed in his father’s arms, where he dies.

Hale wasn’t thinking about the publicness or privateness of the video when the comments came rolling in, but the support she’s received on the site has been welcome, if surprising. When people started commenting, Hale thought, “If it helps people in some way, or inspires them to appreciate the life that they have in some way, then I’ll leave it up.”

“And I’ll take the prayers,” she says.

Regardless of the reception, the practice of online memorials as a way to celebrate the stillborn child and validate the experience of those who mourn them, only seems to be growing.  

“There was a time when people would hide the one little photograph with the worn edges from too much handling. They would hide those away and sneak time with that photograph once in a while and mourn,” Dr. Cacciatore says. The popularity of these videos, she says, is a result of “the movement to empower these women.”  

And to those that still think it strange, she says, “Of course it would be unusual for people who get to tuck their children into bed at night.”

Has your life been touched by stillbirth? Share your story with us. We’ll read your contributions and may post some of them in the coming week.

Optional: