IOWA Alumni Magazine | February 2010
The Birth of Grief
In sharing their anguish, bereaved parents attempt to break the taboo of stillbirth

The day after his birth, Oscar's parents brought him home. In the warmth of their sunroom, Brenda and Jodi Linley cradled him in their arms, stroked his soft round cheeks, and marveled at his perfect button nose.

Then they sat down and lovingly wrote his obituary.

They'd had friends over for dinner just a few days before and Oscar had been hiccupping away inside Brenda's womb. You have to feel this, she told them. In the hours that followed, she noticed her baby moving less and less and made an appointment to ease her mind.

It only takes a few seconds for a heart to shatter, in the time it takes a doctor to say I'm sorry, we can't find a heartbeat.

When Brenda heard these words, she jumped off the exam table, her swollen belly still glistening with ultrasound gel, and vomited. Nine months of anticipation, planning, and excitement toppled into an abyss of unbearable sorrow.

Oscar Ramon was born and died at 3:23 a.m. on August, 2, 2005, a mere two weeks before his due date.

"All I wanted to do was see him, hold him," says Brenda, 93BA, 99MA, who next faced the agonizing task of delivering her child's lifeless body. To endure the labor and birth process, her mind switched into magical thinking. This can't be right; maybe he's really alive. She had an overwhelming desire to meet her son, and the only way out of the nightmare was to bring him into the world.

On the door of her labor and delivery suite at UI Hospitals and Clinics, nurses placed a sticker with a purple heart to alert everyone that this was not a room of joyous celebration, but of irredeemable loss. For a tragedy of this magnitude, there are no words.

Generally defined as the death of a baby at 20 weeks or more of gestation, stillbirth occurs 26,000 times each year in the United States. At least every hour, another sticker appears on a laboring mother's door. Stillbirth is as ancient as humankind—yet so unspeakable in its anguish that it remains cloaked in darkness and mystery.

Despite its frequency, stillbirth is one of the least studied pregnancy complications. More than half of stillbirths occur in the last trimester with around 15 percent during labor and delivery. While some of these deaths are the result of birth defects, infections, placental problems, umbilical cord accidents, or a mother's chronic health conditions, almost 60 percent of stillbirths go unexplained. Shocked and bewildered at the end of otherwise uneventful, picture-perfect pregnancies, many parents receive no answers as to why their babies died.

In recent years, though, stories of stillbirth have come out of the shadows.

As more parents dare to describe the indescribable, like Iowa Writers' Workshop graduate Elizabeth McCracken, 90MFA, who shares her own soul-searing stillbirth experience in the memoir, An Exact Replica Of a Figment Of My Imagination (see sidebar), and as the medical community embraces a philosophy of caring that allows parents to begin resolving their grief, people are learning how to more gracefully face those times when hello also means goodbye.

"Losing a baby, that's losing hopes and dreams," says Jane Wilkins, 99BSN, a UIHC nurse who worked with a multidisciplinary team to establish the Touching Hearts Perinatal Bereavement Program 25 years ago to support families who've experienced stillbirth, miscarriage, and other perinatal death. "The labor and delivery unit is supposed to be joyful place. This is one of the hardest things doctors and nurses do."

Oscar Ramon

A lady whose gentle smile and calm demeanor radiate warmth and compassion, Wilkins witnessed her first stillbirth as a nursing student in the late 1960s. A woman arrived on Wilkins' floor from the ER and delivered her quiet baby to a hushed room. Hysterical, the mother repeated over and over: "I don't hear the baby cry. Why isn't my baby crying?"

No one said a word. Wilkins stood frozen in agony, feeling as if she had no authority to speak up, yet also convinced that this treatment was inhumane. The nurses whisked the baby out of the room as the frustrated doctor told the mother: "Next time, come see me sooner."

Horrified, Wilkins gently touched the woman's shoulder but could offer no other comfort. "Clearly, no one knew what to do back then," she says. Medical protocol dictated that mothers shouldn't see their babies; fathers were encouraged to make final arrangements for a child. Often, mothers were left out of even attending their babies' services. Mothers were also told to just "move on." For years, this standard of care left many parents hollow and haunted, unable to cope with their despair.

In an optimistic society that cleaves to the happy ending, people hesitate to openly discuss death and grief, especially the death of a baby. The loss of a child leaves them shocked, faltering, and silent—or stumbling over words about angels and better places. Bereaved parents often suffer in isolation because friends and family don't know what to say.

At least physicians and nurses now handle stillbirth in a drastically different way, thanks to pioneers like Wilkins, who joined the UI in 1969. Although she left for a few years to raise her own children, she returned in 1983 and discovered that the stillbirth procedure was very much the same. Parents basically received a referral to social services and a copy of the book Empty Arms. Bolstered by new medical literature promoting better approaches toward bereaved parents, Wilkins was determined to make crucial changes. She wrote protocols for caregivers tending to mothers who lost a baby and chaired a committee of nurses, social workers, chaplains, morticians, and physicians. Their hard work became the foundation for Touching Hearts. "We can't make the death of a baby better," Wilkins says. "When cure is impossible, caring is the most important thing."

Perhaps the biggest change is to encourage parents to spend time with their stillborn children and gather mementoes of remembrance. Brenda and Jodi Linley treasure a pillow imbued with memories and significance. Filled with 5.3 pounds of rice, it represents Oscar's birth weight and bears the imprint of his delicate feet. The Linleys keep this pillow in their home as a symbol of Oscar's place in their family and to share his memory with their two-year-old daughter, Norah. The Linleys also cherish dozens of photographs of their boy, a clip of his dark hair, and his special baby outfit with the yellow ducks.

Will Valet, 97BA, carries a permanent reminder of his first child, Elijah. He pulls up his pants-leg to reveal a tattoo of angel wings and a date he will never forget: June 21, 1999—the date Elijah was born, the day after Father's Day, the one time he held his son and gently soothed him in a rocking chair.

"Honestly, I think about him every day," Will says. Even gone, Elijah remains a vital presence for Will and his wife, Callie. They see him in the eyes of their other children, miss him deeply at holidays, and constantly wonder what kind of person he would have become.

Even parents without tangible reminders think of their lost children for the rest of their lives. Wilkins recalls a woman in her 60s who arrived at UIHC for a hysterectomy, a woman who once had a stillborn son but lacked any keepsakes. During her stay, nurses talked with her about the newly organized Touching Hearts program, and a palpable sadness came over the woman's face. "It's so great that you are doing this," she said. "I never got to see my stillborn baby, and it is one of the regrets of my life."

Incredibly, the woman's husband pulled a photo from his wallet, a picture of their son snapped at the funeral home, a relic he had secretly kept for 40 years. Even this husband and wife couldn't openly talk with each other about their broken dreams.

In the early days of the Touching Hearts program, labor and delivery nurses took simple photographs with Polaroid cameras. They gathered on Wilkins' back porch to sew tiny gowns, hats, and booties. Today, with the support of UIHC's Volunteer Services, the program offers free professional photography services through its Cherished Portraits initiative. Beautiful baby outfits arrive from the hands of volunteers with Diana's Angels in Marion and Iowa City's Preemie Project. The inspiration behind the Diana's Angels project was a mother who suffered the loss of her premature twins—and couldn't find clothes small enough for their burial. She was forced to buy doll's clothes at a toy store, which only magnified her sadness. Volunteers with both Diana's Angels and the Preemie Project handcraft clothes in a range of sizes to fit babies from as small as 16 weeks gestation to those delivered full-term.

Many parents need to see and hold their babies in order to let go. In any unit where patients lose a child to stillbirth, miscarriage, or newborn death, Touching Hearts immediately offers services that include a handmade, quilted packet (in pink, blue, or yellow) of bereavement information and the opportunity to plan a memorial service. The program helps parents collect mementoes that can include clips of hair, imprints and moldings of tiny hands and feet, and the tape used to measure their babies. Parents receive the opportunity to give the first bath and gingerly dress their children, taking as much time as they need. The Linleys even seized their funeral director's offer to take Oscar home for a little while.

Parents and medical researchers alike believe that they can save more babies if states adopted better stillbirth reporting methods. Proposed federal legislation aims to improve the collection of critical data to determine the causes of stillbirth and sudden infant death, to better identify risk factors and prevention strategies, to increase public education and awareness, and to expand support services for families who have experienced such a loss.

Children's Hospit

Iowa already operates its own stillbirth registry—the Iowa Stillbirth Surveillance Project, inspired by four Des Moines-area mothers (including state representative Janet Petersen*) who believed more research could prevent other parents from losing their babies.

"The overall goal is to pilot a system that could serve as a model for other states," says Paul Romitti, 94PhD, who directs the Iowa Registry for Congenital and Inherited Disorders based in the UI College of Public Health, of which the stillbirth surveillance project is a part.

In 2004, state leaders directed the Iowa Department of Public Health to develop a standardized stillbirth evaluation protocol. As a result, Iowa healthcare providers can now collect demographic data, health history, pathology reports, and other information that may give researchers clues for developing effective studies.

When the numb shock of their children's deaths began to recede, the Linleys and Valets felt pain like they had never experienced before. Although they initially received great support from friends and family during the births of their babies, it ebbed away over the years. Meanwhile, the parents had to find ways to live with a permanent grief that, though time changes its shape and intensity, is always right below the surface.

With what would be Elijah's 11th birthday a few short months away, Will Valet will take the day off work to spend time with Callie and the kids. In what's become a family ritual, they might put flowers on Elijah's grave in Oxford or just go to lunch. Whatever they do, they'll be celebrating Elijah.

In August, the Linleys will hold their annual "camp" for nieces and nephews in honor of Oscar. Whether they light candles on special days, plant trees, or name stars in remembrance, parents find ways to carry the spirits of their lost children forward. The grief of stillbirth may last a lifetime—but so does the love.

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