October is National Pregnancy and Infant Loss Awareness Month as well as National Sudden Infant Death Syndrome Awareness Month. It’s also one of the busiest months of the year for Share Pregnancy and Infant Loss Support.
A birth from loss
In 1977, Sister Jane Marie Lamb began Share after listening to a bereaved family’s cry for support at St. John’s Hospital in Springfield, Ill. She worked with Dr. Glen Davidson, a professor at SIU Springfield School of Medicine, to develop a program to help those experiencing perinatal grief. Since then, Share has expanded to 75 chapters in hospitals and community settings in 29 states, and one in Canada. The national office has been located in a small house in downtown St. Charles since 1991.
Executive Director Sarah Lawrenz joined Share in 2015. Sarah says Share is not as well known in St. Louis as it is in St. Charles, despite having several chapters at Barnes-Jewish, Children’s, St. Mary’s, and Missouri Baptist hospitals. Chapters have also been formed through community organizations, social workers, and parents independently.
Bereavement Care Manager Patti Budnick worked as a nurse in a hospital that had a Share chapter before joining the staff in 2019. She experienced her own loss in 2013 and points out having a baby is the only time you go to the hospital for something good. “When it doesn’t turn out that way,” Patti says, “it becomes a traumatic situation for everyone.” She says her nursing education didn’t include much bereavement and loss training, and it is rarely part of her continuing professional education.
Share offers professional training for caregivers working with families who have faced the loss of a baby or for anyone wanting to start a support group. The Sharing and Caring training involves two days of in-person training and 2.5 hours of online content for a total of 18.25 nursing contact hours. This fall, a fully online version created with input from families and funded by The Funeral Service Foundation will be available.
Share also provides a one-day Caring Companion training for parents who are 18 or more months out from their loss and wish to help others. Companions are available for a grieving parent who needs to speak to someone who has gone through a similar situation, Patti says, “It helps them to see there is hope for them to heal also.” Grandparents of someone who has had a loss may also be companions. Patti says the training helps companions understand how family members experience the loss differently.
The pandemic greatly increased interest in Share. Sarah says, “During COVID, we had so many Facebook messages, emails, and phone calls—more than we’ve probably ever had in 40 years.”
Share holds weekly online support groups in English and Spanish and offers brochures in both languages for nearly every situation related to the loss of a child available on its website. Patti says Share understands that culture is very important when it comes to the loss of a baby. “You’re combining birth and death, two really strong cultural aspects of everyone’s life,” she says. In trainings, she tells people they’re not going to be an expert on everything and that every person’s culture and traditions are going to be unique.
Remembering their names
Most of the parents Share supports love to hear their baby’s name. Sarah says friends and family may be uncomfortable and act like the baby never existed, which can be very hurtful. She says, “It’s very helpful to that family to talk about their baby and to just say their names.” Patti adds, “She knows of her loss. She’s dreamt about her baby and what that child would be doing now.”
Share provides many opportunities for someone to remember their baby and to be around those who want to celebrate those brief lives. The Share Walk for Remembrance & Hope is their biggest event in October. Since 2002, the annual 5K walk in Frontier Park in St. Charles has grown from 50 families to over 3,000 attendees. The walk can be done virtually and are held simultaneously by many of their chapters. Patti explains, “We have families [where] maybe it’s their first loss this year and they’re walking, but then we have families that have walked for 10 and 20 years.”
Anyone who registers for the walk can have their baby’s name on a t-shirt. At one time, the names all fit on one shirt. Today, there are nearly 600 names split between two shirts. The names are also displayed on a large memorial wall at the event.
Share also offers the opportunity to memorialize a child with an engraved brick placed along the scenic garden walk to the Angel of Hope statue in Blanchette Park. The statue of a cherubic angel with its arms outstretched is an exact replica of the Christmas Box Angel statue in Salt Lake City, Utah, inspired by a best-selling book by Richard Paul Evans. The statue has been replicated in over one hundred locations across the country. Share holds a dedication service at the park each spring and fall.
Annually on October 15, Share holds a Wave of Light event for Pregnancy & Infant Loss Remembrance Day. Parents around the world light a candle for one hour beginning at 7 p.m. local time to honor their babies and say their names, creating a ripple of light as it moves through time zones.
Supporting the supporters
Along with financial support received through its Angel Ball gala fundraiser and grants, Share has received acknowledgment and donations from caring individuals and groups, including blankets and other items from Girl Scouts, and yard maintenance from high school boys.
Elyshia Cope, Marketing Director for StarCom Racing and mother of a child who died at birth, has been helping get the word out about Share on racing cars. Sarah says, “We’ve had the full car wrap and we’ve had it on the side. She does this throughout the year for us and it’s so awesome!” Elyshia also donates hot passes that allow access to the garage area before a NASCAR race.
One volunteer, who lost a baby a long time ago, started sewing tiny baby clothes because she did not know what her baby was buried in. “That weighed heavy on her heart,” Sarah says, “so she wanted to make sure that people who have had a loss that their babies [were] dressed in something beautiful and comfortable.”
Four times a year, Baue Funeral Homes in St. Charles provides a free memorial service for anyone who’s had a loss before 20 weeks.
Share is currently forming a junior board of people compassionate about its mission who would help plan events for fundraising and recognition.
Sarah wants everyone to know Share is there to listen and support parents in the way they need to be supported. “So many families I feel are afraid to walk through our door or afraid to call us,” she says, “Don’t suffer alone.”