It’s on the Inside that Counts: Palliative Care and the Heartbeat Bears of Shawn Jenkins

College of Nursing Assistant Professor and alumna Carrie Cormack, DNP, APRN, CPNP, is the lead Palliative Care faculty in the Doctor of Nursing Practice program. She works as a Pediatric Palliative Care Nurse Practitioner at MUSC Shawn Jenkins Children's Hospital.

The Advanced Fetal Care Center (AFCC) at the Medical University of South Carolina is a regional referral center and national leader in care for woman and families whose pregnancy is complicated by a fetal diagnosis that requires additional care and expertise either through management of the pregnancy or through specialized post-delivery care of mother or baby.

Families who travel to this clinic, housed in the Shawn Jenkins Children’s Hospital, often feel anxious and afraid, knowing that they may be receiving life-altering news about their unborn child. The visits can be long and overwhelming. While hope is offered and intentionally woven into the discussions, it is often overshadowed by words such a “serious,” “complex,” and “concerning.”

The role of the palliative care team is to offer support to families during these visits, throughout the pregnancy, and after the birth of the baby. Depending on the circumstances, some families lean heavily on the guidance of the palliative care team to assist them with complex decision making and birth planning, while others may not require the involvement of the team, or only minimally after the baby is born. Support from the palliative care team takes various forms, from hand holding in a hospital conference room to emails and phone calls after the visits are over. It also comes in the shape of plush, soft-stuffed animals or “heartbeat bears” donated by a family that knows all too well the anguish of these prenatal team visits.

Heartbeat bears allow a recording of a baby’s heartbeat to be captured and saved forever. This special keepsake, especially for parents going through the journey of grief and loss, can be a gift like no other. By inserting the small, recorded box into the center of the bear, parents can listen to the beating heart of their baby at any time. Offering a heartbeat bear, especially toward the end of a difficult AFCC visit, has become a very special part of the clinic and is equally meaningful for families and providers.

Only three months after losing their baby girl, Autumn, the Dickey family started a charity to honor her legacy. As a testament to their care experience at MUSC, they created Autumn’s Way to help hospitals provide families who have experienced the loss of a child with memory-making opportunities and financial support for funeral expenses. As part of their work, in January they collected and donated over 65 heartbeat bears to community hospitals. They share with others that their own heartbeat bear, made during one of their difficult AFCC appointments, has been a very special reminder to them of their journey and time with Autumn, especially for big sister Alexis, who cherishes her special bear. Their hope is that by raising money to purchase additional heartbeat bears, other families will be offered these precious mementoes, and that silence and grief will be replaced by the sweet sound of a heartbeat.

—Carrie Cormack, MSN ’02, DNP ’14