Navigating the complexities of HIE can often feel like wading through a thicket of uncertainties and questions. Families can spend a lot of time and resources to discern the root cause of the diagnosis, often amidst a tangle of information and misperceptions. It’s a journey that requires delving into the details, understanding the nuances, and working closely with medical teams […]

HIE can cause autism at up to 44% higher incidence than neurotypical babies and children, and children with HIE who don’t have motor impacts were 6x more diagnosed than those with motor impacts. HIE is a SPECIFIC cause/etiology of autism. Others include genetic, metabolic, prematurity, structural brain anomalies, toxic shock, infection, inflammatory disease and traumatic injury, as well as environmental […]

The HEAL Study looking at therapeutic hypothermia (cooling) and a medication called erythropoietin is one of the most recent, and most significant, clinical trials in the context of HIE research over the last decade. The results were technically “negative” – meaning erythropoietin didn’t show a clinical benefit – but the data collection and size of the cohort, 500 families strong […]

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 […]