BY COURAGEOUS PARENTS NETWORK

For 2021 the Ilene Beal Courageous Provider Award, the Selection Committee chose two honorees. And choosing two, they said, was nearly impossible, because the caliber of nominees was so very high. We start by thanking all of the patients, patient families and providers who participated in the process, and we salute all the providers who were considered this year. It is incredibly meaningful and inspiring to read about you and your many ways of caring for children who are seriously ill. Particularly at this time, these stories both ground us and lift us up. There is so much goodness and hope here.

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Here are the stories of this year’s honorees.

“She overwhelmingly supports hope if there is any hope to be had.”

 These words were submitted as part of a nomination letter, by the mother of Harper Grace. Harper Grace was born with Edwards Syndrome, also known as Trisomy 18. Now almost four years old, Harper Grace has faced, and conquered, numerous medical challenges with the support of her family and her team of caring providers. Indeed, through Hanna, says Harper Grace’s mom, “we will see palliative care shift from being viewed as ONLY end of life care managed by a single specialist, and instead morph into a group effort. Where teams of multi-discipline specialists come together to work for a better, longer, and quality life for those born differently.”

Hanna is Hanna Epstein, DNP, CPNP, nurse practitioner in the Pediatric Palliative Care Program of the Medical University of South Carolina, Shawn Jenkins Children’s Hospital. The Selection Committee noted the many examples of Hanna’s humanity, selflessness and approach to raising up others. These, said the Committee, are among the qualities that she shares in common with Ilene Beal, whose legacy was the inspiration for our generous funding. Hanna’s modeling of the value of pediatric palliative care, as her family experiences it, also aligns with CPN’s strong commitment to promoting and advocating for PPC.

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“Dr. Levy made us feel heard, cared about, and safe in our decisions. It is now more than a year since Billy passed away, and those things still matter to me. They still help me with my grief. Even though our interactions were short in time, I believe I will carry them with me throughout the years as I go down this rollercoaster called grief. She provided so much to us as we were losing everything.  We are so grateful she is the doctor who showed up for us.”

 The nomination letters for Carly Levy, MD, Attending Physician and Program Director for the Nemours/A.I. duPont Hospital for Children Hospice and Palliative Medicine Fellowship, from both families and colleagues, are filled with references to her courage. They speak to her ability to directly confront an issue or a question to be asked; to speak in terms that parents or other providers can hear; to show compassion in the face of unspeakable loss. There are references to Dr. Levy’s habitual statement “Let’s just name that,” which inspired the Selection Committee as it corresponds to CPN’s essential value of courage in working with colleagues and families in the face of often-unthinkable conversations and their effects on decision-making.

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The Ilene Beal Courageous Provider Awards will be presented this winter, hopefully in person in South Carolina and Delaware. We look forward to celebrating our 2021 models of compassionate and courageous palliative care in pediatrics. Congratulations to our recipients, and many thanks to your teams of advocates! We join them!

The Ilene Beal Courageous Provider Award is generously funded by the Ilene Beal Charitable Foundation. Learn more about the Award, which annually honors a pediatric provider who provides exceptional family-centered care in circumstances of serious childhood illness.