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Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

HIElights of Hope: An Anthology of Stories From Families Who Have Been There

Single stories are as much a myth as definite certainty, linearity, or a fixed definition of hope. At its core, HIElights of Hope brings together diverse voices from the hypoxic ischemic encephalopathy (HIE) community to debunk these myths. In reality, hope knows no bounds, one of the only definite certainties is the ubiquity of uncertainty, and the NICU is experienced by families of both premature and full-term babies. So, cheers to the many stories of HIE, of hope undefined by outcome, of finding beauty in the unexpected, and of love unvanquished.

HIElights of Hope is an anthology that highlights sixty-five stories of those in the HIE community, from families impacted by HIE to healthcare providers to researchers. Many HIE families express the desire to hear the stories of others who have endured similar struggles as them, and yet, there is a lack of resources that exist to fulfill this need. The HIE family stories that do exist are often scattered across different platforms, making it difficult for families to hear many stories at once. Since the range of potential outcomes of hypoxic ischemic encephalopathy is so wide, hearing a breadth of diverse stories can help parents better cope with uncertainty, consider different possibilities, and conceptualize what the future might look like. Furthermore, the current narrative surrounding the neonatal intensive care unit (NICU) focuses heavily on preemies, leading parents of full-term infants with HIE to feel largely excluded and out of place. By highlighting the narratives of those impacted by HIE in a centralized location, HIElights of Hope spreads awareness about HIE, helps families feel less alone, and highlights that just like the outcomes of HIE, those impacted are diverse and come from a variety of backgrounds. We are currently working on distributing this book to NICUs across the nation so that families new to HIE can connect to vital support and wonderful community.

“Inspiring and at the same time informative, HIElights of Hope teaches us how parents of sick infants courageously deal with their newborns’ illness. The feedback from parents can advance both clinical care and research aimed at improving care of neonates. This book should be required reading for all trainees. The perspective of parents is part of the art and science of pediatric medicine.

Seetha Shankaran, MD: Neonatologist & Principal Investigator of the 1st Randomized Control Trial of Whole Body Cooling for Neonatal HIE

Inspiring hope, no matter the outcome, is the greatest gift a NICU family can ever receive. HIElights of Hope gives families this very gift by offering a glimpse of what it means to stand in the face of uncertainty and find the deep-seated strength that lies within each parent of a NICU baby.”

Keira Sorrells: Founder & Executive Director of the NICU Parent Network

“Thank you so much to the author, the families, and the providers who shared their stories for this unique piece of work! Each and every story I read taught me a new lesson. It’s definitely a must-read for anyone caring for infants affected by HIE!”

Mohamed El-Dib, MD, FAAP: Neonatologist, President of the Newborn Brain Society, Director of the Neonatal Neurocritical Care at Brigham and Women’s Hospital, and Assistant Professor of Pediatrics at Harvard Medical School

About the Author: Simran Bansal is Hope for HIE’s first-ever intern and a recent graduate from Duke University interested in exploring the intersection of storytelling and medicine. She will be working as a clinical researcher at Duke’s NICU before attending medical school. As a future physician, Simran hopes to empower her patients with the irrefutable knowledge that their stories matter and are worthy of being heard.

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