COPING WITH THE DEATH OF A BABY; SHARE BREAKS THROUGH BARRIERS OF SILENCE

George and Iris Dordoni are proud of their son. Like most parents, they love to talk about him, and their eyes shine as they show pictures of their dark-haired infant. Nicholas lived from winter until spring. He will live in his parents' memory forever.

Cheri and Clarence Bodenstein's first two sons never drew breath, nor did Tressa and Paul Barr ever see their first daughter smile. But the Bodensteins and the Barrs will forever hold close the memories of their babies.

All three families, like so many other parents, know the profound quiet that settles at the death of a child. Whether prompted by miscarriage, stillbirth or neonatal death, for some, the silence can be shattering.

The death of a baby is more common than some may think. Statistically, one out of every four pregnancies ends in miscarriage; one of every 80 babies is still born.

All three families agree that the best aid family or friends can offer when such loss occurs is simply a willing ear. "It's not so much what you say," Iris Dordoni recommended, "It's how you listen."

"We really like the chance to talk about him," George Dordoni said their son. "Our talking about him," explained Iris Dordoni, "that's all there's ever going to be."

After Nicholas died in a St. Louis hospital, the Dordonis, who reside in Cape Girardeau, recognized they needed to find help, a place they could talk with other parents who had faced such devastating losses. They found SHARE.

The acronym stands for Source of Helping, Airing and Resolving Experiences, and the program is aimed toward helping parents who have experienced a loss.

"Our society readily accepts the loss of a parent and will talk about it. If you lose a teen, people don't talk much, but with infant death, there's silence," said Gayle Unverferth, co-facilitator of the bereavement support group at Southeast Missouri Hospital.

Through the efforts of Unverferth and Linda Logan, both registered nurses at Southeast, the local arm of the international SHARE program was launched here in 1985. It is a structured way of helping parents when the unthinkable occurs. Logan and Unverferth say that the hospital's administration is supportive of SHARE and that the program is widely accepted by physicians.

Where talking about miscarriage in particular, along with stillbirth or neonatal death, was once essentially taboo, studies have shown that efforts to ignore or bury the grief are ill-advised.

"It used to be handled by the physician giving mothers tranquilizers," Logan said. The belief was the less said, the better.

"When I was in nursing school, this issue was not addressed," Unverferth recalled. By not addressing the loss and by not offering choices when possible, such as holding the baby and having photos taken, "we thought we could protect them," Unverferth said. "What we were actually doing was hurting them by making their grief last longer."

The SHARE program begins with nursing intervention at the hospital, Logan said. The aim is to start parents on the road to resolution as soon as possible. If immediate steps aren't taken, Logan said, parents tend to "stuff" their feelings.

"The sooner steps to resolution are started, the healthier the recovery," she said.

SHARE meetings are open to any parent who has experienced a miscarriage, a stillbirth or if their young baby died before ever leaving the hospital.

And, it doesn't matter how much time has elapsed since the loss, or where the loss occurred. Resolution translates to acceptance, not forgetting, or getting over the loss.

Unverferth said a local SHARE meeting has been attended by someone who experienced a miscarriage almost 50 years ago. That person related that she had never been allowed to grieve.

Contrary to prevailing societal belief, there is no stop watch on recovery from any kind of loss of a child, and both moms and dads grieve, albeit in their own way and at their own pace. Feelings of disorientation can extend two years and beyond.

Cheri Bodenstein of Cape Girardeau remembers immediate and intense feelings of isolation.

"People try to spare your feelings. They feel like if they don't talk about the baby that they won't be hurting you so much," she recalled. Conversely, she said, "You're trying not to talk about your babies because you know people don't want to watch you cry."

The Bodensteins lost two sons in 1990. Their first son, Jacob George, died at 26 weeks into the pregnancy. Their second son, Joseph Louis, was lost when Cheri was about 13 and a half weeks pregnant.

The support group offered a place where Cheri Bodenstein could grieve in her own way. Her husband did not attend. "We grieved in different ways and that's hard," she said.

"You feel like you're the only person in the world that this has happened to, and then you find out that you're not," she said, reflecting on her experience with SHARE.

"One of the things that SHARE helped with was giving me the strength to talk about them," she said. "If you keep it all bottled up, you're never going to heal. Just being able to get it out, and to cry, to be able to grieve, helped."

While there are certain phases of mourning that many people experience, no two people grieve the same way, for the same period of time, nor even to the same degree.

"People's perceptions of loss are different," Unverferth said. "It's just really personal."

Many factors influence the depth of attachment to an unborn child, and persons shouldn't feel something is wrong with them if they don't experience intense grief if the pregnancy is lost.

"It depends on how much they have invested in that pregnancy," Logan said.

Unverferth added, "In the first 10 minutes after the pregnancy test, the mother may imagine the major events in the life of the unborn child."

However, miscarriage, in particular, is often treated by well-meaning family and friends as a non-event, Unverferth said. "Society just doesn't imagine that you can bond that quickly."

Bodenstein remembers. "I was planning on having a baby, not planning on planning a funeral," she said. "I was numb."

Tressa and Paul Barr of Advance lost their first daughter, Katie, at 36 weeks into the pregnancy. Suddenly, four years ago in July, there was simply no heartbeat.

"For the longest time, I blamed myself," Tressa Barr said. Though she had tended to her pregnancy carefully, she kept searching for some kind of reason for her baby's death.

SHARE, she said, put her and her husband in contact with parents who also had experienced such pain, and it helped put them better in touch with one another. Because of the sessions, Tressa Barr said, "we understood what each of us was going through."

In some ways, the search for answers continues for the Dordonis. "We're still going through the horror of what we went through," Iris Dordoni said.

Born Nov. 3, 1992, two months premature at Jewish Hospital in St. Louis, Nicholas died April 22, 1993 at Children's Hospital. He suffered respiratory problems from birth.

"We had some really special moments with our child," Iris Dordoni said, "but we still have an empty room upstairs, a lot of dreams that we never got the chance to dream."

Nicholas' parents haven't missed a SHARE meeting since they began attending the gatherings in May of last year. The gatherings help bring out thoughts that otherwise might not come to light, they say.

Iris Dordoni describes grief as a slow evolution, the stages of which, her husband said, keep recycling.

Cultural images of the man as the protector can present a whole set of troubling issues for fathers, George Dordoni said. "You can feel like somehow you've failed," he reflected. "There's always this choking back of anger."

Feelings of helplessness stoke those fires. Expectations at work and other factors can preclude or delay a father's opportunity to grieve.

Through the sharing of experiences, George Dordoni said, a certain measure of comfort is both obtained and offered. After seeing the enduring love of parents who have lost babies, he said, "we don't feel like it's so bizarre that Nicholas is so important in our lives."

Attending the first SHARE meeting is a hurdle on the road to resolution, Logan and Unverferth say. Many SHARE participants admit initial doubts.

"You expect something on TV, a group of whacked out people all sitting around and crying," George Dordoni said. In reality, he said, SHARE is a group of friends drawn together by something they have in common.

The SHARE group meets at 7:30-9 p.m. the second Thursday of each month in the first floor Cancer Center classroom at Southeast Missouri Hospital.

Parents are asked to introduce themselves and relate the type of loss they have experienced. There is no pressure to say more.

Things to say --

"I am sorry you had a miscarriage."

"I am sorry to hear of your loss. Can I be of any help?"

Affirm that it was a life, a baby or a real loss (listen to them before commenting)

Sayings to avoid --

"It is God's will" - we never know enough to say that, say rather, "He is with them at this time."

"I understand your pain, I had a broken leg once," or "I understand, my grandmother died recently."

"It is a punishment."

"You have an angel in heaven."

"You can have other children - you are young."

"You are lucky you lost if early."

"You didn't have time to get attached."

"At least you weren't showing or in maternity clothes."

Don't ask if it was planned for.

"It would have been abnormal anyway."

"It is nature's way of discarding defective babies."

Don't tell about someone who had a stillbirth or SIDS and imply that the miscarriage is easier.