Enrolled in a clinical trial or research study? We’re building out dedicated groups for families to connect. HIE families have a long history of participation in clinical trials in the pursuit of improving therapeutic options and care (it’s why we have cooling!) Currently, there are two trials underway that we are supporting and have set up dedicated groups for: If […]

Our families are all too familiar with the agonizing “wait and see” game that comes with an HIE diagnosis. The uncertainty surrounding our child’s long-term impacts, outcomes, and quality of life is a harsh reality we grapple with daily. We wait for results, we wait for researchers to uncover new therapeutic interventions, and we wait for data that could offer […]

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 […]

Advocacy is important; there’s no doubt about it. But let’s face it: putting it into action can be hard, especially when navigating the complexities of medical care. Between emotions running high, the need to digest large amounts of not-so-easy-to-understand information, and the pressure to make quick but responsible decisions, it’s totally normal to feel overwhelmed. Plus, add in the uncertainty, […]

April 10th is National Siblings Day, and what better day than today to recognize Hope for HIE’s Super Sibs? What’s a Super Sib, you may ask? A sibling of a brother or sister with HIE across any outcome or impact. Sometimes, our Super Sibs can bear a significant load: they are asked to take on a lot, go forth with […]

Between our phones, laptops, computers, and the myriad of other devices we use daily, it’s almost as if we have a virtual companion at our fingertips, ready to assist with any HIE-related questions or concerns, day or night. It’s natural to turn to digital tools for research and support, but here’s the catch: while AI offers convenience, it doesn’t always […]

At Hope for HIE, we hold the providers who showcase their commitment and passion for research and improved clinical care practices for those impacted by HIE’s various outcomes near and dear to our hearts. So when Dr. Laura Gilbert, a pediatric neurologist at Lurie’s Children’s Hospital, teamed with us during Cerebral Palsy Awareness Month to shed light on a prevalent […]

So many of our medically complex kids get recurrent respiratory infections. Researchers at Vanderbilt University are wanting to hear YOUR experience as a parent on how to improve care! The team is looking at getting input from families to develop patient and family-centered outcome measures. Details below! Who: US-based families of medically complex kids who have been hospitalized for respiratory illnesses […]

Welcome to 2024 HIE Awareness Month! We come together every April – families, clinicians, researchers, partners, supporters and others in our global community – to spread awareness into the world about neonatal and childhood acquired Hypoxic Ischemic Encephalopathy. This year, the community theme is TRANSFORMING HOPE. Our community is over 10,000 families, researchers, clinicians, and community members strong, across all ages and […]

Hypoxic-ischemic encephalopathy (HIE) is a condition that affects infants and children with many causes due to reduced oxygen supply before, during or after birth, and in childhood, leading to potential neurological challenges. One crucial aspect of managing HIE in children is understanding their baseline, which refers to their typical level of functioning or development. This concept plays an important role […]