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TribUniverseNews-Tribune Online

November 21, 1997

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Duluth News-Tribune. All rights reserved.

The ache of empty arms

Mystery and stigma continue to surround SIDS, making grieving the loss of a baby even more difficult

Baby missed Lisa and Jerry Greene of Proctor hold a picture of their daughter, Jessica, who died of SIDS when she was 19 days old. The couple wants people to feel more comfortable talking with them about their daughter. They also want to raise awareness about SIDS.
Photo by Dave Ballard/News-Tribune

Story by Kendra Rosencrans
News-Tribune staff writer

An empty crib stands next to Lisa and Jerry Greene's bed and an empty high chair sits next to the dining room table.

It's been six months since their infant daughter, Jessica, inexplicably stopped breathing, a victim of what medical professionals have termed since 1969 as Sudden Infant Death Syndrome or SIDS.

The explanation was a relief. But the grieving has been hard.

``We want people to treat us like they used to treat us,'' said Lisa Greene of Proctor. ``Jessica was a member of our family. We shared her with the neighborhood. But some of our neighbors still don't talk to us. Sometimes, we feel very alone.''

SIDS is the leading cause of death for infants ages 2 weeks to 1 year. Some 200 to 300 infants in Minnesota and Wisconsin, and 7,000 nationwide, die the same unexplainable way, according to the Minnesota Sudden Infant Death Center in Minneapolis.

Despite the frequency of SIDS and its far-ranging effects on survivors, experts say SIDS still is surrounded by myths and carries a stigma typical of a bygone medical era. Some of that is due to the mystery of SIDS, which is unpredictable and unpreventable. And some of that is because a SIDS death, like any other unexplained death, is investigated by a team of police and medical professionals.

Unfortunately, because of the stigma and mystery of SIDS, friends, neighbors and relatives may pull away from the family, making the grieving process more difficult.

``There always seems to be a suspicion that something could have been done differently,'' said Juanita Jean Mellum, a public health nurse with the Fond du Lac Human Services Center in Cloquet. ``People say, `What if, what if, what if.' ''

The guilt and suspicion may be intensified because the child's death is investigated. In Minnesota, law enforcement and medical officials follow a prescribed format designed specifically for investigating the deaths of children younger than 2. Part of the investigation includes asking the family for an autopsy, which is needed to rule out possible causes.

Mellum thinks changing that process slightly could make it easier for the family and hopefully remove some of the stigma.

As a member of the state Ad Hoc Committee on Infant Death Investigation, Mellum has asked the state health department to include public health nurses in the investigations as advocates and case coordinators for families.

``I'm calling it the compassionate component,'' Mellum said. ``We did it when I was in South Dakota. There is a whole different feeling when a nurse helps. The parents would sit down and talk with me because I was a nurse and I understood SIDS. I think the nurse should be there to soften the blow -- not cover anything up -- but to soften the blow.''

As more families use day care, more SIDS deaths are happening at child-care centers. In Minnesota, 40 percent of SIDS deaths occur at child-care centers, so the grief, myths and fears about SIDS are being extended to child-care providers as well.

``SIDS isn't catchy and it doesn't reflect the quality of care that the baby received,'' said Kathleen Fernbach, director of the Minnesota SIDS Center and a public health nurse.

These are all reasons why the Grief Support Center at St. Mary's Medical Center recently undertook an awareness campaign to increase the understanding of the significance of pregnancy and child loss.

``We need to listen to what these families need and we need to keep their child's name alive,'' said Ben Wolfe, director of the grief center.

With that goal in mind, area parents held a memory walk, set up informational booths at the mall and held a memorial service. The Greenes wanted to share their story in order to raise awareness about SIDS and grief.

The family had been so excited about Jessica's birth on May 1. The brown-haired baby was a symbol of a new beginning -- a new marriage for Lisa, 29, and Jerry, 35, a new child in their blended family.

Jerry can't forget the morning of May 20 when everything fell apart. He'd fed his daughter at 2:30 a.m. and held her for an hour on the sofa as she fell asleep.

``I fell asleep and she was in my arms,'' he said.

In the morning, Jessica wasn't breathing.

Jerry called 911 as Lisa started CPR. Paramedics rushed Jessica to the hospital, but they couldn't revive her.

For the Greenes, her death was unimaginable.

``When you suffer the loss of a child, you lose a part of yourself -- your dreams, your hopes, everything is shattered,'' said Lisa Greene.

Someday, the family may put the baby furniture away. Right now, it helps with their grieving.

Pictures of Jessica sit on the television and on shelves, along with those of her 9-year-old sister, Jenny, and 6-year-old brother, Josh. The family has connected with a SIDS support group and other help through the St. Mary's grief center.

It helps, some. But it's hard.

``I still check on the children at night to see if they're breathing,'' Jerry Greene said. ``But the hardest thing is knowing that it's OK to cry, it's OK to just let go. It's OK to have these feelings.''

Kendra Rosencrans covers health care. She can be reached weekdays at (218) 723-5342.

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