The tragedy of a stillbirth

Stillbirth - A Vast and Sudden SadnessBy Claudia Kalb NEWSWEEKFeb 1, 2009 - 11:46:54 AM
Each year thousands of families experience stillbirth. As science seeks causes, parents use photography to honor their babies and cope with their grief.
(HealthNewsDigest.com) - Marirosa Anderson was still sweating from a workout when her cell phone rang at 8:20 p.m. on Nov. 11, a particularly cold night in northern Virginia. Anderson had planned to spend the evening with her husband and two small children. Then she saw the caller - ID number. She took a deep breath, readied herself and answered the phone. Karen Harvey, a labor-and-delivery nurse at Inova Fairfax Hospital, gave her the rundown. A baby was about to be delivered by C - section and the parents wanted photographs. Could she come right over?Anderson threw on jeans and a sweatshirt, grabbed her camera bag and ran out the door. At the hospital, Harvey led her to a quiet room where Laurie Jackson and her husband, Michael, were waiting. Laurie's pregnancy had been easy and enjoyable, filled with the happy buzz of baby showers and the lovely air of expectation. But during a routine check that Tuesday afternoon - just three days before her due date - the Jacksons were given the incomprehensible news that their baby no longer had a heartbeat. The night before, Laurie had felt the baby kicking. Now she and Michael were confronting the impossible: saying hello and goodbye to their firstborn child at the very same time.Anderson introduced herself, then took out her camera, turning her attention to a perfect little girl who lay still in a bassinet, peaceful in a white cotton blanket with pink and blue stripes. "She's precious," Anderson said. Then she started to shoot. The baby's face. Click. Her tiny hands. Click. Her little pink feet. Click. Now it was time for the three of them. Laurie cradled her baby girl in the crook of her elbow, Michael leaned in next to her. Together they studied their daughter's face - her mouth resembled Laurie's family, the rest was pure Michael - they whispered to each other, they came together as a family. Their baby girl weighed six pounds, seven ounces and she was 19 inches long. They named her Brenna Rose.Pregnancy is supposed to be the most wonderful time, brimming with anticipation, kicking with newness and life. But as novelist Elizabeth McCracken writes in "An Exact Replica of a Figment of My Imagination," a recent memoir about the death of her first baby, "this is the happiest story in the world with the saddest ending." Stillbirth happens more often than we imagine - 10 times more often than sudden infant death syndrome, or SIDS, a condition most every parent knows about and dreads. Every year some 26,000 babies die during or after the 20th week in their mothers' womb (a loss before that is considered a miscarriage) or die during birth. In at least half of all cases, doctors have no idea what went wrong. The impact is impossible to measure. Mothers, fathers, brothers, sisters, grandparents, aunts, uncles, cousins and friends - all must figure out how to absorb the vast and sudden sadness, to grieve and, in many instances, to reconcile with a God who has shaken their faith to its core.Decades ago, stillborn babies were whisked away from their parents to morgues; doctors and nurses pretended nothing happened, mothers were medicated with Valium, parents suffered their sorrow alone. It was in the late 1970s and early 1980s that the medical and psychological thinking about stillbirth began to evolve when researchers started studying the impact of a baby's death and parents began telling their stories. From silence and detachment came acknowledgment and remembrance. Today nurses encourage parents to hold the babies. Molds of hands and feet are created. Locks of hair are collected. And photographs are taken. Not just the clinical snapshots that nurses have been capturing for years, but striking and sensitive portraits that have burgeoned since the formation of a group called Now I Lay Me Down to Sleep in 2005.Volunteer photographers who belong to the group, including Anderson, take pictures of stillborn babies - and babies expected to die soon after birth - for their parents at no cost. The idea was born from the life of Maddux Haggard, who was 6 days old and on life support in Colorado when his parents, Cheryl and Mike, decided they wanted pictures of their baby and contacted Sandy Puc', a local photographer well known for her beautiful baby portraits. After that photo session four years ago, Cheryl Haggard and Puc' founded Now I Lay Me Down to Sleep, which has since grown to 7,000 photographers, most of them professionals, across the globe.Photographing the dead may seem strange, even morbid, especially in our American culture so uncomfortable with death. Those feelings are only intensified when the dead are the newly born or just hours or days old. "We associate giving birth with life, with the future, with the defiance of death," says Irving Leon, a psychologist at the University of Michigan Medical Center in Ann Arbor who specializes in reproductive loss. "To have that smashed, violated so powerfully, it's something people don't want to look at, both literally and metaphorically."Postmortem photography, though, has a long and treasured past. In the 19th century, when people died at home, families spent much of their savings on expensive silver daguerreotypes depicting their loved ones after they had passed away. Now I Lay Me Down to Sleep is a modern-day incarnation of this "memento mori" photographic genre (Latin for "remember your death"). Memories facilitate grieving, says Leon, which is critical to long-term healing. Holding a baby, talking to her and photographing her - all create memories that help parents cope with a devastating loss.Parents who are hesitant about holding their babies often change their minds toward the end of a shoot, realizing that they'll have no other chance to embrace their child. And the sessions bestow a quiet time for mothers and fathers to treasure and honor their babies without any interruption from nurses or doctors. In years past, parents didn't expect all of their children to live. Today babies are dreamed about and dwelt on, and the deep attachment that develops between parents - especially mothers - and their unborn children starts earlier than ever before. At eight weeks, a baby's heartbeat can be seen on ultrasound; parents now find out gender and assign names months before their babies are born. All this has intensified the grief reactions many women feel after they suffer not just a stillbirth, but a miscarriage too, says Leon.Studies show that mothers benefit from bonding with their stillborn babies. Joanne Cacciatore, a researcher at Arizona State University, studied 3,000 women and found that those who had the chance to see and hold their babies had fewer symptoms of depression and anxiety. This benefit may be temporarily reversed during a subsequent pregnancy. And nobody should be pressured to hold their babies. But more than 80 percent of women who did not regretted the lost opportunity. Cacciatore, whose fourth baby, Cheyenne, died in 1994, calls this a period of "ritualization," a time for parents to honor their child and to feel some semblance of control during an emotionally chaotic time. Holding a stillborn baby allows women to connect and then separate themselves from their babies after months united in the same body. And it gives parents the chance to create positive memories, rather than live with the unknown: What did she feel like? Whose nose did she have? Was she peaceful?Doctors, nurses and social workers who encounter stillbirth have come to know this, and their thinking about how to care for patients has evolved enormously. Elisabeth Kubler - Ross's seminal 1969 book, "On Death and Dying," exposed the impact of loss and the long and intricate process of grieving. Parents of stillborn babies started talking about what it felt like to lose their children; physicians and psychologists began challenging the hush-hush approach. Michele Schwarzmann, director of maternal child health at Mercy Medical Center in Baltimore, can't forget the first stillbirth she witnessed in the 1970s. " 'Michele, you can't cry, you have to be strong'," she remembers her supervisor telling her. A decade later, Schwarzmann says she was finally allowed to express her sadness: "I sobbed for every baby I never got to cry over."Stillbirth is in many ways a medical mystery. Despite its gravity, it has been largely overlooked. Even today, researchers don't know the true incidence of stillbirth nor do they fully understand why it happens. In some cases, doctors can identify a cause - a prenatal infection that travels from mother to baby, a genetic anomaly, a placental abruption, an umbilical - cord accident. But in at least half of all cases - more than 10,000 a year - they can't pinpoint the problem. "Over the last 50 years, we've put a lot of research and clinical energy into preventing sick babies from dying after birth and a lot of energy into premature babies," says Dr. Robert Silver, an Ob - Gyn at the University of Utah School of Medicine. "We haven't put the same energy into stillbirth."All that became clear at a workshop held by the National Institute of Child Health and Human Development (NICHD) in 2001. "We realized that we needed to do a study that was larger than anything undertaken in this country," says Dr. Catherine Spong, chief of NICHD's Pregnancy & Perinatology Branch. With NICHD funding, Silver and other researchers began collecting data on more than 500 stillbirths at five sites around the country. Now they're analyzing the information. The hope is that the new information will help researchers sort out how to reduce a woman's risk for stillbirth, identify problems in advance so that couples can prepare for a loss and, ultimately, save lives.No matter how good the science gets, however, some number of babies will continue to die and parents will continue to grapple with the shock. Not long after joining Now I Lay Me Down to Sleep in 2007, photographer Jennifer Clark got a call from a hospital near Salt Lake City. The parents, Melina and Tom Anderson (unrelated to Marirosa Anderson), had three other children - a son, Jack, then 6, and two daughters, Amy, 4, and Mae, 2—and they were excited about welcoming their fourth, another girl, named Ella. At 39 weeks, however, the baby's heartbeat started dropping precipitously and Melina had to have an emergency C-section under general anesthesia. Melina remembers waking up and hearing her doctor say, "I'm so sorry, she didn't make it." The umbilical cord, wrapped tightly four times around the baby's neck and once around her arm, had cut off her blood supply. Melina "made the kind of sound you never want to hear," says Tom. "Not really a scream, but almost. A moan." And then she started to cry.Clark was nervous. "I remember standing outside the door before I went in and I prayed," she says. "I wanted to make photos they would cherish." She also remembers a sense of peacefulness as she worked. It was a sacred time, and she was buoyed by the gratitude shown by Tom and Melina. But she was also profoundly saddened. At times, she had to put her camera down to wipe the tears from her eyes as she captured the images. Amy touching Ella's fingers. Mae, in her pink - and - yellow kitty - cat pajamas, a pacifier in her mouth, peering at the baby's face. Jack, who had accompanied his mother to every doctor's appointment. Tom and Melina looking at their daughter's face.The next day Tom carried his daughter to a hospital exit next to the ER, far from the place where new mothers are wheeled out with newborns in their arms and smiles on their faces. A mortuary attendant strapped Ella onto a gurney and drove off in a big white van. In the weeks after Ella's burial, Melina suffered both physical and emotional pain. Her breasts had to be bandaged to stop the milk from coming in - a poignant reminder of what should have been. Pregnant women brought tears to her eyes; new babies made her think about the milestones she was missing with Ella. But tangled up in the sadness was the conviction that Ella needed to be remembered. Clark's images allowed Melina to savor a face that was fading from her memory. And the Andersons' tributes to their daughter now assure her a constant place in the family. On the first anniversary of Ella's birth, the Anderson family held hands at her grave and sang "Happy Birthday." Then they went out for dinner and shared a birthday cake.When Clark first heard about Now I Lay Me Down to Sleep, she felt a powerful urge to participate, but she never imagined that she'd find herself on the other side of the lens. Last year Clark was overjoyed to discover she was pregnant. Her first three babies were healthy. This time, Clark's fetus was diagnosed with trisomy 18, a genetic disorder so catastrophic that less than 10 percent of babies make it to their first birthday. The Clarks, devout Mormons, never considered terminating the pregnancy. Above all else, they prayed that their little boy would be born alive and that he would live for some time - hours, days, weeks, maybe even long enough to go home.Connor Clark was born on Dec. 22 at 5:54 p.m. For just over an hour, his parents, his siblings - Ellison, 10, Sydney, 7, and Hayden, 2 - his grandparents and some of his many aunts and uncles held him, talked to him, rejoiced in him. Two photographers from Now I Lay Me Down to Sleep shot the sobbing and the smiles, the kisses, the hugs, the gentle cradling and the embrace between Jennifer and her husband, Spencer, when they realized they were losing their son. At 7:20 p.m., Connor took his last breath. At his funeral service two days after Christmas, the Clarks showed a powerful video compilation of black-and-white photographs set to music for their family and friends. A life deeply mourned, a life lovingly celebrated.To learn more about Now I Lay Me Down to Sleep, visit their website . For additional information on stillbirth and to find support resources for families, visit the M.I.S.S. Foundation and First Candle. LINKwww.firstcandle.org And for more on research conducted by the National Institute of Child Health and Development, you can visit their site .