SHARE Atlanta

Newspaper Article about Loss from Lucy Monahan, former SHARE Atlanta president, now in New Jersey and SHARE Atlanta's Marcia McGinnis

His name was Andrew and he was his mother's first child, stillborn at full term on April 14, 1987. Later, social workers met with his mother, Lucy Monahan of Mendham, N.J. She recalls it being one of the most clinical, unemotional talks she had ever heard.

Thirteen years later, Monahan, who has two healthy children, heads the North Jersey chapter of SHARE -- Pregnancy & Infant Loss Support, the largest and oldest of the nonprofit networks of parents who have lost babies and reach out to others like them. Based in St. Charles, Mo., and founded in 1977, SHARE now has 130 chapters and an international presence.

"The idea is to make sure no mother and father goes through this is alone," said Monahan, a social worker who holds support group discussions and presentations in her living room.

She's not the only one who wants to help. Janet Tischler founded the independent MIDS (Miscarriage, Infant Death and Stillbirth Inc.), in Parsippany, N.J., after the death of her full-term son, Darren, on Dec. 9, 1981. "My philosophy is simple," Tischler said. "We're here for parents to find some peace in themselves along the way. That's what matters. I don't tell the parents they have to come to every meeting. I don't do that. They have enough guilt."

Contrary to popular opinion, stillbirths -- babies delivered dead after at least 20 weeks of gestation -- are not freak incidents or something relegated to history books. Nor are they something simply to be gotten over and not discussed. One in every 115 births in the United States today is a stillbirth, according to the Wisconsin Stillbirth Service Program, an organization that has created medical protocols for conducting autopsies on stillborn babies. In all, there were 26,486 stillbirths in the United States in 1997, according to the National Center for Health Statistics. Add to that figure miscarriages, the way 20 percent of all pregnancies end. That's a lot of babies, a lot of parents, a lot of grief, a lot of work to do, particularly since the perinatal loss community is virtually invisible. After all, there are no babies.

"That's why we call this 'a silent sorrow,' " Monahan said, citing a book of the same name by Perry-Lynn Moffitt, Ingrid Kohn, Isabelle A. Wilkins and Michael R. Berman. Recognizing the magnitude of that sorrow, a new perinatal loss movement aimed at improving research and treatment, both medical and emotional, is gaining momentum across the country. Doctors, parents and grief counselors are beginning to identify themselves as a community, and making early rumblings about a national alliance. They're reaching out to the people who are attempting to rejoin life after a baby's death, to integrate the experience into who they are.

"We play with dolls when we're young, and most of us expect to have a family," said Marcia McGinnis, co-founder of SHARE's Atlanta chapter and Webmaster of its 300-page Web site, www.shareatlanta.org, among the most comprehensive in the field.. "When we lose a baby, we lose our past and we lose our future. We lose a lot."

Other losses include religion, in some cases, and relationships. "You've just lost your baby and your friends don't call you. You are so isolated. You are so sad," said Monahan, who said four of her six siblings did not call her after she lost Andrew. "When you do get the courage to talk, people pat you on the head and here come the platitudes -- 'There must have been a reason' or 'God needed an angel' or 'Don't worry, you'll have more.'" Not every woman makes it through the grief process.

"Do you realize the shock people go through when they realize their family and their friends of many years will not support or acknowledge them during the toughest part of their lives?" Monahan said. "You take the loss, the depression, the isolation, and that is a recipe for suicide."

As the network for emotional healing grows, too, so does medical interest in the topic. "Twenty years ago, babies just died," McGinnis said. "Today, babies die of cord accidents, of strep infections, of chromosomal problems. We know why babies die."

A national alliance could give a social movement more clout, according to Monahan and McGinnis. "With an alliance, perhaps more doctors will study the causes of stillbirth and miscarriage," Monahan said. "Now there are few research dollars and, frankly, no money in it for doctors. We need to be vocal." As awareness and respect for the delicate gestation and birth process grows, many moms hope monitoring efforts will be put in place. Then perhaps fewer mothers, when they feel a baby stop moving, will get the kind of response Monahan did when she called in to report that she did not feel Andrew kicking. "The doctor told me to lie down and have some ice cream, that the sugar would stimulate the baby," she said.

She's been working to honor Andrew's life ever since, even though people still recommend she just let the issue go. "I tell them this meeting we have every month is a celebration of how we love and value those children," she said. "I tell them, 'This is as valuable to me as your going to your child's baseball game.' "

Two years ago, Lucy Monahan (former SHARE Atlanta member/President and now group leader in N.J.), Lynne Anderson and I discussed bereaved parents’ changing needs. We realized that because of meeting in a supportive atmosphere for over 15 years, the “Pregnancy and Newborn Loss Community” had grown in its identity and had become more focused on its issues. As a result, more parents’ needs were being met, and they now were requesting a higher level of “accountability”-both emotionally and medically.

Within the last twenty years, no one really understood that we even HAD issues. We agreed that the commitment of groups such as SHARE in zeroing in on the emotional needs of bereaved parents had greatly influenced our community’s awareness.. Today many groups and professionals represent and aid us as well. We then posed the question - how could we more fully address “our” community’s needs. Several ideas have been posed and are still be considered.

The preceding article (which went out in a national release) by Lorraine Ash is a wonderful discussion about Lucy’s loss, and the very issues that we are exploring at this time. Ms. Ash, herself a bereaved parent, is using her position to clarify the broader concerns within our community. We appreciate her newspaper’s willingness to let us distribute her informative article to increase awareness and to pose some important options for us all to consider.

We would like to believe that through our growing connections, possibly in the form of an alliance someday, we can continue to raise awareness, and promote prevention, understanding, and support for the emotional and medical needs of bereaved parents. Please consider writing or e-mailing SHARE Atlanta with your opinion (state if you would allow it to be published either on our website or in our newsletter). Marcia McGinnis, SHARE Atlanta, Fall 2000