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JANE WILKINS A UIHC nurse builds a program from the ground up, raising the standard of care for families who’ve lost a child.

Jane Wilkins remembers her very first experience with a stillborn baby when she was a student nurse working in labor and delivery. The baby was whisked out of the room, while the mother asked, “Why isn’t my baby crying?”

“We were all just silent,” recalls Wilkins, who came to University of Iowa Hospitals and Clinics as a new nursing graduate in 1969. “Nobody knew what to say or do.”

That was the way things were done, Wilkins explains. “You didn’t talk about it, and the mom was supposed to forget about it.”

Wilkins worked in UIHC’s Department of Obstetrics and Gynecology for a few years before raising kids of her own. When she returned in 1983, she discovered things hadn’t changed much.

“We needed resources for these families,” Wilkins says. “All the nurses felt we were taking good care of patients’ physical needs, but leaving them short emotionally.”

With information about perinatal loss just beginning to appear in the medical literature, Wilkins and several colleagues set out to write procedures for their unit. They formed a multidisciplinary committee of nurses from neonatal intensive care, labor and delivery, postpartum, and the nursery, joined by social workers, chaplains, morticians, and physicians. From the work of that committee came the Touching Hearts Perinatal Bereavement Program, now in its twenty-fifth year.

The most radical change was that Touching Hearts offered grieving parents and families time alone with their children.

“We got a lot of comments back from families about the experience of seeing and holding their baby—how important that time was,” Wilkins says. “We knew we were on the right track. It empowered the nurses to stand up and be advocates for their patients.”

The program is initiated automatically in units where patients lose children to stillbirth, miscarriage, or newborn death. Patients and their families are offered bereavement literature and the opportunity to plan a service. They also take home a quilted packet of mementos, including photographs, a lock of hair, handmade items of clothing, plaster casts of hands and feet, even the tape measures used to measure their children.

The program started small. Nurses took the photographs initially provided to families using a Polaroid camera paid for by UIHC Volunteer Services. The first items of clothing—tiny flannel gowns, hats, and booties—were hand-sewn by labor and delivery nurses on Wilkins’s back porch.

Now these clothing items are provided through Volunteer Services, from organizations like Diana’s Angels in Marion, Iowa, and Iowa City’s own Preemie Project. Volunteer Services also coordinates donated services of professional photographers through its Cherished Portrait Program.

Wilkins credits her partnership with Volunteer Services as the key to Touching Hearts’ success. From the beginning, the program has been funded exclusively through grants from Volunteer Services and the Children’s Miracle Network.

In a teaching institution where staff turnover is constant, education has remained central to the mission of Touching Hearts, with orientation to the program for every nurse, physician, and medical resident who enters the UIHC’s ob/gyn department.

“One of the biggest things that needs to be taught,” Wilkins notes, “is how to talk to families. What to say, what not to say, how to get in the door. How to interact when you fall into that role.

“In these cases, we can’t fix what’s wrong,” she adds. “When cure is not possible, then the ‘care’ part of nursing becomes essential.”

Wilkins regularly speaks at nursing conferences across Iowa and the U.S. She has written a chapter on perinatal bereavement for the standard text Nursing Interventions for Infants, Children, and Families. Touching Hearts also has helped hospitals across Iowa set up perinatal bereavement programs of their own.

“We are a tertiary care hospital, and part of our mission is education,” says Wilkins.

Her work with Touching Hearts—both on the job and on her own back porch—has earned Wilkins staff excellence awards from both the University in 1991 and the Board of Regents, State of Iowa, in 1993. In 1998, Wilkins received the Governor’s Volunteer Award for Outstanding Special Program.

“It recognized the importance of the program to the families of Iowa,” she says.

To ensure its continuation, Wilkins has reorganized coordination of the program: finances are now handled by Sheila Frascht, grief services coordinator for the University of Iowa Children’s Hospital, while Sue Swearingen from UIHC Nursing Services coordinates inpatient services and Wilkins continues to coordinate outpatient services. And though it will be some years before she gives up her coordinator role completely, Wilkins already has plans for retirement: to volunteer her sewing skills, along with years of accumulated knowledge, to contribute to Touching Hearts however she can.

“There is a huge need,” she says. “This program is so important to me—I don’t want it to ever change.”

Story by Eileen Bartos; photo by Kirk Murray.

June 22, 2009