Sharing the grief

~ Local program celebrates 21st anniversary of helping parents

It should be a time of joy. A young woman finds out she's pregnant. She and her husband prepare a nursery, buy baby clothes and furniture. They settle on a name. They begin to anticipate who the baby will take after; how smart she'll be in school; how she'll grow up to be a doctor or a judge and she'll be responsible for their first grandchildren as time goes on.

But then something goes horribly wrong. The pregnancy ends, or the baby is stillborn or dies early in infancy.

In such a sorrowful time, SHARE is there to help.

SHARE is an international organization that helps parents who have lost a child through miscarriage, ectopic pregnancy, stillbirth or infant death. A nun who was also a nurse at St. John's Hospital in Springfield, Ill., Sister Jane Marie Lamb, started SHARE in 1977 because she could see that young parents were suffering and no one was there to help them.

Today, over 100 SHARE groups are functioning in hospitals around the world. Southeast Missouri Hospital just this week celebrated its 21st year of helping grieving parents. Within the past few weeks, Saint Francis Medical Center also affiliated itself with SHARE. Personnel from both hospitals are trained in SHARE procedures and Saint Francis refers parents to Southeast's SHARE support group.

Gayle Unverferth, who heads up the SHARE program, said she was a brand new nurse working in the neonatal intensive care unit when she and a nurse in labor and delivery realized that their training did not cover how to comfort grieving parents. Southeast's administration advised the two to look for a support group to affiliate with. The marketing department has supported SHARE's efforts, she said, and the Southeast Hospital Foundation actively seeks donations to keep the program afloat.

"We could not have a better support system, " Unverferth said. "We are truly blessed."

Because of that support system, parents also have one. Unverferth said that as soon as hospital staff know that a newborn is in grave danger, SHARE support begins. Hospital staff guides bewildered parents through decisions they never expected to make: Do they want to see the baby or hold it after death, do they want photos of the baby and how much do they want their other children to participate?

Some young parents might never have been to a funeral before. "Now they're going to have to plan one," Unverferth said. "They have no idea."

Mostly what SHARE does is affirms for the parents that even for a brief moment they had a child. That's why hospital staff asks if the parents want to see and hold their baby. SHARE volunteers create memories for the parents by giving them a book to record their baby's name and date of birth and death and validating the child's brief passage in this life.

"When someone you love becomes a memory, the memory becomes treasured," Unverferth said. "They help create good memories."

SHARE volunteers, parents who have "walked the walk" as they call it, make little dresses and booties for a baby's funeral. One mother knits tiny blankets to wrap premature infants in. In a memorial brick patio area at the hospital, there is a special section for the little ones. Relatives and friends can buy a brick in memory of the child with his or her name and dates of birth and death engraved on it.

An item many parents cherish is a cast of their baby's hands or feet. A SHARE volunteer makes an impression using dental alginate and pours plaster of Paris into the mold. Every detail of the baby's hand or foot is reproduced in the casting.

"It's proof that once a baby existed," Unverferth said. "They don't want to forget their baby. It validates their loss. The biggest complaint parents have is people don't acknowledge they have a loss."

Parents find comfort and support among other parents at a gathering the second Tuesday of the month. Unverferth said the support group helps those with recent losses to make it through the "firsts" that will follow: the first Christmas without the baby, the first Mother's Day, the first anniversary of the baby's death. As time passes, the group rejoices with those who find they're pregnant again and have a full-term healthy baby. That affirms for others in the group that they too have that hope.

SHARE provides free burial in an area of Memorial Park Cemetery called the Littlest Angels area -- for babies who were fewer than 20 weeks into the pregnancy. Unverferth said there is a marker there, and a tree planted in memory of the little ones. Just last week SHARE dedicated its second Littlest Angel area. The first one has been filled.

"We have helped support over 2,000 families which had a pregnancy loss before 20 weeks," Unverferth said.

Infant death happens more frequently than most people imagine, she said, and is something families carry with them forever. One out of four pregnancies end in a miscarriage, and one of every 100 births ends in stillbirth. Of every 100 stillbirths, 50 sets of parents will never know why their baby was stillborn.

SHARE can help families grieve together. Often fathers are overlooked, she said. Fathers often have to put their grief on hold while they take care of practical details. Grieving can put a terrible strain on a marriage. Unverferth said SHARE encourages families to grieve together, and to change traditions during holidays to honor their lost child -- perhaps making an ornament in the baby's memory for the Christmas tree or lighting a candle in the baby's memory. Releasing balloons is also comforting, she said.

"Society needs to be reminded that every baby is very real and very loved," Unverferth said.

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What to say -- and not say -- to a grieving family

Gayle Unverferth of the SHARE program encourages the hospital staff to use the baby's name when talking to the family. "The family wants to hear people say the baby's name," she said. "They will not hear it hardly ever again."

The best thing anyone can say to a bereft mother is simply: "I'm sorry."

Things not to say: You're young; you'll have another baby. You're lucky you have other kids at home; think about them. You have an angel in heaven (Unverferth says that one is not always helpful; the mother may be angry with God at that moment). It was for the best. There was probably something wrong with it.