Every HIE journey is different — and yet, there are powerful threads that connect families across experiences, diagnoses, hospitals, and years. In this Peer Perspective Series conversation, Brigid and Ana, both mothers of children with HIE, shared their lived experiences as full-term NICU families and how those experiences shaped their paths into advocacy, healing, and connection. Their stories remind us that advocacy […]
When your child is diagnosed with neonatal or pediatric-acquired Hypoxic Ischemic Encephalopathy (HIE), one of the most difficult parts of the journey is learning to live with uncertainty. From the earliest days in the NICU or PICU, questions about outcomes, therapies, and development are common, and there are often no clear answers because of the nature of HIE and brain […]
Navigating an HIE diagnosis can be overwhelming, and having the right support at the right time can make all the difference. From the moment of diagnosis and throughout every stage of their journey, families need reliable information, compassionate guidance, and a strong support network—no matter the impact or outcome. To ensure this, we are committed to building a team that […]
No matter its length, whether it’s a NICU stay, PICU stay, or hospitalization, the experience is often accompanied by trauma, and our HIE families want an anchor amidst the storm. In our recent conversation with Dr. Latrice L. Dowtin, Co-Chair of the National Network of NICU Psychologists, founder and clinician at PlayfulLeigh Psyched, and Hope for HIE Medical Advisory Board […]
Some say it’s a grief journey, some say it’s through trauma… the journey with HIE is like no other. It is a multi-layered and complex journey that weaves grief, trauma, adaptation, and other ways to pick apart the experience in the most unexpected, heartbreaking, hopeful, and unimaginable ways. Recently, we were introduced to Nancy B. Miller’s adaptation stages, and so […]
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
