Child Life in Action

in Bereavement and Pregnancy Loss with Heather Eppelheimer, CCLS

by Bea Wikander | August 3, 2018

Heather Eppelheimer, CCLS, began her child life career in a float position at Cincinnati Children's Hospital, where she had the opportunity to support patients and families in a variety of inpatient and outpatient settings. During the early years of her career, she developed an affinity for non-traditional settings such as bereavement and psych services. For the past eight years, Heather has worked at the Pavilion for Women, a women's hospital attached to a pediatric hospital at Texas Children's in Houston where she provides bereavement support across the pregnancy spectrum.

In a special keepsake box, parents can include a blanket, hat, diaper set, outfit, ceramic keepsakes, ultrasound photos and pregnancy test.

Before Heather started at the Pavilion for Women, the only child life specialist on staff worked primarily with premature infants in the NICU. Gradually, the need for bereavement support for women and families experiencing perinatal losses became apparent. Heather joined the team as a child life specialist focused on women's services, where she covers the NICU, works with families experiencing perinatal loss, and supports patients such as teenage mothers and mothers on hospital bed rest.

Heather works closely with the Perinatal Palliative Advanced Care Team (PPACT), a multidisciplinary team that includes a neonatologist, NICU nurse, social worker, and spiritual care. Heather's role focuses on education and bereavement planning for families who have received terminal fetal diagnoses or are expecting babies who are not expected to live past delivery.

Over the course of several meetings that take place before delivery, Heather gets to know families to develop a rapport and assess their individual needs. She discusses options such as comfort care and hospice, helps write birth plans, and reviews options for post-natal support. If the family includes siblings, Heather educates them in a developmentally appropriate manner about what to expect when they meet their new baby brother or sister. Even when there are no siblings, Heather views her work as "providing services to a patient and family," where the patient may be very young and not expected to live.

Most parents are receptive to the support and services Heather offers, including education, legacy building, and memory making. Ink prints, photos and molds are keepsakes Heather provides for many families. When those mediums are not feasible, Heather provides other options such as a card where parents can write the baby's name and date of birth. In a special keepsake box, parents can include a blanket, hat, diaper set, outfit, ceramic keepsakes, ultrasound photos and pregnancy test. Even with miscarriage, Heather offers advice about how to honor the child's legacy and preserve memories.

Photos are an important part of creating tangible memories. Heather has received training in bereavement photography and is often the only non-family member present while parents and siblings greet and mourn a new baby. She considers this role an honor, and many of these families leave a lasting impression. Heather recalls a family whose baby passed away during delivery, and she was the only non-family member in the room as the parents and their two-year-old son greeted and said goodbye to their daughter and sister. Heather helped the older sibling understand what was happening and use his sister's name as he said goodbye. While providing this emotional support and education, she also took photos that the parents could share with their son when he was older. Heather often hears from families who wish to express their gratitude for her service and support during a painful time in their lives.

Working with siblings is important, as it is in any medical setting where parents may be preoccupied with their own strong emotions or uncertain how much information to share. Heather advises parents on how to talk to their kids and what to expect from their behavior after the family returns home. When working directly with siblings, Heather reassures them that they did not cause whatever loss the family is experiencing, explains diagnoses and death in a developmentally appropriate manner, and creates keepsake boxes they can return to for meaning and memories in the future. The keepsake boxes are important because even children who are born after a loss may one day be curious about the brother or sister they never met.

The longevity of keepsakes is important, and Heather provides her photos on a CD that parents can choose to open if and when they are ready. She also encourages families to record the baby's heartbeat on their phones, where it can be uploaded and saved in various locations. Heather and her healthcare team follow a standard of care that dictates which types of keepsakes are appropriate based on gestational age and other ethical considerations. This strict standard of care is important because it prevents additional trauma for the patient, family, and staff—if a particular type of mold is not feasible for a certain gestational age or medical condition, for example—and allows nurses and child life professionals from other departments to support families with consistent care when Heather is not at the hospital.

In addition to her work with families experiencing loss, Heather assists pregnant teenagers and mothers who require hospital bed rest. She prepares teenage mothers for the birth experience and educates them about what developmental milestones to expect from their babies during the first year. Mothers on bed rest may feel isolated; Heather helps these patients maintain healthy relationships with older children at home and suggests therapeutic activities to promote bonding with their unborn child. Mothers on bed rest and older children who may visit also benefit from normalization activities.

Heather is passionate about bereavement support and has continued her education and professional development by obtaining a Certification in Perinatal Loss Care (CPLC) and pursuing Resolve Through Sharing (RTS) training. She is also an active member of the Pregnancy Loss and Infant Death Alliance (PLIDA), an organization whose members include parents, genetic counselors, doctors, and other healthcare professionals such as nursing and child life. At this year's PLIDA conference, Heather will present on ethical responsibility as it relates to keepsakes and legacy building. Her presentation will focus on the techniques and considerations involved with imprints and molds and creative techniques like heart beat recordings. Heather is also an active member of ACLP and serves on the Hospital-based/Non-traditional Role Committee.

Heather has found her child life niche in bereavement and plans to continue to serve children and families in this capacity. She supports families at their most vulnerable moments, and her exceptional service and passion for bereavement support have resulted in a Caught You Caring Award, a hospital-wide recognition of staff who go above and beyond. Every year, her hospital system selects 25 nominees, a couple of whom receive the prestigious hospital-wide award. Heather was honored and surprised and to be this year's winner. Congratulations, Heather!

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Child Life in Action

in Bereavement and Pregnancy Loss with Heather Eppelheimer, CCLS

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