Enhancing bereavement care and support for our patient families

Photo courtesy of Kate Hurlbut

Five years ago, my husband, Phillip, and I mourned the loss of our beautiful 7-week-old twin daughter, Ella Grace. She fought courageously in the neonatal intensive care unit (NICU) at Texas Children’s Hospital until she passed away in Sept. 2015. Since our daughter’s untimely death, one thing that has helped us find healing and comfort is providing support and outreach to other patient families experiencing grief.

As thankful as we are for the care we received when Ella passed, we realized the need for a more private environment for parents to say goodbye to their babies. When the opportunity arose to raise money to open a bereavement room at Texas Children’s in Ella’s memory, we embraced it wholeheartedly. In June 2017, our family dedicated the Butterfly Bereavement Room at Texas Children’s Pavilion for Women NICU, and two years later, we helped to open the Garden Room at Texas Children’s Hospital The Woodlands.

Since that time, I have been involved with Texas Children’s Palliative Care team as a bereaved parent advisor on the Palliative Care Family Advisory Committee. My dream after we lost Ella was to develop a bereaved parent mentor program at Texas Children’s to provide support for families who have lost a child. In those early days of grief after losing Ella, I remember feeling very isolated and alone, and desperately needed to talk to someone who had survived a loss like ours. I needed a support system. So, I began thinking, “What if Texas Children’s had a program that matches a parent who is actively going through a loss, with another parent who has already gone through a loss and is further down in his or her journey?”

Between caring for my patients as a nurse practitioner for Texas Children’s Pediatrics, and being a wife to Phillip, and a mother to our 5-year-old twin daughter, Anna, and 7-year-old son, Luke, I began devoting my time to research. I wanted to know what pediatric hospitals across the country had a bereaved parent mentor program. During my research, I connected with a parent mentor at one of the hospitals, and she shared how they structured and implemented their mentor program to support bereaved patient families.

A few weeks later, I approached our Palliative Care leadership team and shared my vision of what a bereaved parent mentor program could possibly look like here at Texas Children’s. Taryn Schuelke, our bereavement specialist, and Joy Hesselgrave, the assistant director of Palliative Care, were incredibly supportive in helping me turn my dream into a reality. After two years of hard work, our collaborative efforts culminated in the launch of our first-ever Texas Children’s Bereaved Parent Mentor Program.

Our mentor program provides support to families whose children are part of Texas Children’s Palliative Care Program. Instead of face-to-face encounters due to COVID-19, the mentor sessions are conducted via phone, text or virtual Zoom meetings. Before being paired with a patient family, our bereaved parent mentors – including myself – have been trained extensively to mentor parents who are newly bereaved or whose children are in end-of-life care. As part of the training curriculum, mentors complete a 50-page workbook that highlights various aspects of mentoring including how to be an active listener, how to ask open-ended questions and how to feel comfortable when silence occurs. The training also includes spiritual conversations, self-reflection questions and interactive role-playing scenarios to prepare mentors on how to respond effectively to situations that might arise. Mentors also attend two virtual training sessions to review other topics including the logistics of the program.

The program’s primary goal is to provide the grieving parent with the support that only another parent can offer based on their shared experiences and circumstances. Our bereaved parent mentors have unique and valuable insights in the grief journey. Oftentimes, their personal stories bring back feelings, emotions and memories that can be particularly helpful for newly bereaved parents to hear and process as they navigate their own grief after losing a child. Each conversation with a parent is captured on an encounter form so our team can follow-up and address any concerns the parent may have. Bereaved parents are matched with mentors for an initial period of 15 months or longer, with the goal of supporting these families beyond the first anniversary of their child's death. If needed, additional support can be arranged.

Since the program’s inception in Dec. 2020, we have received positive feedback from our patient families. Before, they would tell us, “My friends or family don’t know what to say to me because they have not experienced my pain. They don’t know how to comfort me.” Through this program, many parents have shed tears of gratitude because they are so relieved to have a program like this at Texas Children’s where they can open up and talk to someone who genuinely understands what they are going through.

When I hear these testimonials, I am reminded of why we devoted so much of our time and effort into developing this type of program. I am grateful to Texas Children’s for bringing this project to fruition. It is fulfilling to know we’re making a positive impact for these grieving families. My hope is that we will expand this program to other sections of our hospital. As a mom who has lost a child, I want our patient families to know they are never alone. We will always be there to support them during this difficult journey.

Click here to learn more about Texas Children’s Palliative Care Program