Born still, but still alive

In 2001, the nation's pregnancy experts agreed to confront a significant but hidden issue: As many babies are stillborn each year as die from all other causes combined, including premature birth and sudden infant death syndrome.

But unlike those causes, stillbirths are poorly researched, underreported and misunderstood, said Catherine Spong, chief of pregnancy and perinatology at the National Institute of Child Health and Human Development. One in every 200 pregnancies ends in stillbirth, yet in more than half the cases the cause is never determined.

"It's a huge, huge problem," said Spong, a high-risk obstetrician. "And part of the problem is that people go home and nobody talks about it."

Experts found that death reports for stillbirths, or babies born with no sign of life such as heartbeat or respiration, vary widely by state. Autopsy rates are low, and no standard protocol exists for investigations. The gaps led the National Institutes of Health to launch a five-year study to develop standards.

The term "stillbirth" can be doubly wounding for families, implying the baby wasn't "real."

Shannon and Dan Zelazek were so thrilled to be having a child they couldn't wait three months to tell everyone, dove into birthing classes and after a happy, healthy pregnancy, practically ran into the delivery room at a Portland hospital on June 1.

An hour later, the heartbeat they'd heard for months abruptly stopped.

"I'm sorry," Shannon recalls the doctor saying after an ultrasound indicated the baby died. For the next five hours, Shannon had to put that news aside and continue labor.

"I pretended so hard that I convinced myself that the machines were all wrong and that when she came out she would still be alive," Shannon recalls.

She was not. Dorothy Raine Zelazek, a full-term 6-pound, 10-ounce girl, was stillborn. The umbilical cord had wrapped around her leg seven times, cutting off oxygen.

The cry that escaped Shannon as the baby was placed on her chest still echoes in Dan Zelazek's mind. But the silence afterward from those who didn't know what to say or failed to see Dorothy as a person also haunts.

"To me, Dorothy was 5, she was 20, she was every age we thought she'd ever be," Shannon said. "People think you can just have another baby, and that is simply not how it works."

Society sends parents a double message, says grief expert Pat Schwiebert, who co-founded Brief Encounters in Portland and directs Grief Watch, a bereavement resource center for families and caregivers. Before a birth, everyone focuses on how important the child is, a gift to be cherished. But if a baby dies, people expect parents to dismiss that same child and quickly move on.

Dan's colleagues at Robert Gray Middle School in Portland where he's a counselor were wonderfully supportive. But many relationships -- from hairstylists to old friends -- faltered. In the months after Dorothy died, Shannon, 33, quit her longtime career in the moving industry. "I cut myself off from so many people if they don't say the right thing," says Shannon. "The right thing is asking to see a picture of Dorothy."

Shannon carries a photo album of Dorothy, and portraits are displayed at home and in Dan's school office. The photos help others see she was a real child. "People like us come to realize a picture is all we have," Dan says. "It's not like you can take a new picture every month. This is the beginning and the end."

The couple found the support group Brief Encounters just 10 days after the death. Finding a safe place to tell their story helps parents move through the guilt, sadness and longing toward acceptance, Schwiebert says.

But the Zelazeks also found an unexpected outlet for the love they'd marshaled for Dorothy.

Shannon began writing articles on their insights. Instead of birth announcements, they sent 50 reminders that Oct. 15 is Pregnancy and Infant Loss Remembrance Day, when people nationwide hold services. The Zelazeks were the last to leave Adventist Medical Center's ceremony of poetry and harp music, lingering to comfort others.

Shannon began returning hot-line calls for Brief Encounters. "I think it helps people to have someone who understands exactly on the line," she says.

Every Saturday, the couple delivers Meals-On-Wheels in her honor, wearing an angel pin for Dorothy. "We don't have the financial means but we can give our time," Dan says.

They want to someday have another child but aren't yet ready. As their "first" Christmas approaches, they've boosted their volunteering.

"I love my daughter so much, that the best way I can honor her memory is to share our love, try to help others by educating them ... and bring awareness," Shannon says. "Her death has taught me more than any living person has."

The lessons ripple. When Dorothy died, Shannon's mother, Sandi Bruhn, lost her first granddaughter and the child named after her own mother. Bruhn dreamed of giving the little girl a tea set. But instead of putting it away, she displays the china bearing the pattern the "Forget Me Not" -- alongside a photo of Dorothy.

"These babies," Schwiebert says, "teach us all."

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Julie Sullivan: 503-221-8068; juliesullivan@news.oregonian.com

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