Many of Jessie’s patients are intubated, on a ventilator, or sedated. If the patient has siblings, Jessie helps them understand the diagnosis and encourages interaction and bonding. Often, she prepares siblings for their first visit with a brother or sister. Always considering the sibling’s developmental stage and comfort level, Jessie supports siblings as they make meaning of the process, affirms their feelings, and helps them feel included and useful—often with simple gestures such as decorating the room or choosing a special blanket. Jessie says it’s gratifying to see a sibling climb up in bed next to a brother or sister after weeks of being unwilling to enter the room. In many cases, she helps siblings say goodbye, and a focus of her work is inclusion at time of death and acknowledgement of grief—interventions that decrease the likelihood of complicated grief.
As a child life professional working with end-of-life patients, memory making and legacy building are important aspects of her job. She meets families where they are and starts by making sure parents understand the potential of child life to affect their journey. At Norton Children’s Hospital, staff offer three-dimensional plaster hand molds, handprints, thumb prints, and locks of hair. In the beginning of 2016, Jessie’s department received the training and technology needed to offer families recordings of their child’s heartbeat. “The heartbeat,” says Jessie, “is the center of a child. When we think about loving, the heart is what we think of.”
Jessie uses a modified cardiac specific stethoscope that has been converted to contain a small recording microphone within its tubing that ends with a connective cable for a laptop. Jessie then uses Apple’s Garage Band technology to capture the recording, isolate a run of specific beats, and ensure good sound quality. Once a clear heartbeat is isolated, the track is uploaded to a sound box, which is placed in a stuffed animal designed with a Velcro opening in the back.
Initially, the recorded heartbeats were used exclusively in bereavement situations, but Jessie soon realized that siblings—many of whom are separated from a brother or sister awaiting a transplant—could benefit from this technology as well. Eva, one of Jessie’s patients, is able to see her two older siblings, Ethan and Emily, only on special occasions. To help the siblings and other family members with the separation, Jessie recorded Eva’s heartbeat, uploaded it to a sound box, and gave each sibling a stuffed animal with Eva’s heartbeat. Ethan and Emily know Eva is waiting for a transplant and love being able to hug their animals and hear her tiny heartbeat any time they wish. Jessie also uses the recordings before and after transplants so patients can hear the difference and document their journey. The child life department continues to use the recordings for families at end-of-life, and Jessie’s goal for the future is to work with a local organ donation affiliate, KODA, to provide them with recordings to share with families who have selflessly made the decision to share their loved ones’ organs.
Jessie wishes all patients could leave the hospital healthy and happy, but that’s not the reality. She can’t change the outcome, but she can positively impact the experience: “I love having the opportunity to serve patients, siblings, and other family members during this time…and recognize that while I cannot change the final outcome, I can impact the journey.” She feels privileged to help make the journey one in which the voices of patients and families are heard and to support and encourage coping and bereavement for siblings and families before they leave the hospital.
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