Hope for HIE is expanding its intern and student volunteer program under the coordination of Samia Tasmim, Research Associate. Our intern program began in 2025 with a social work pathway, managed by Jennifer Schaefer, CAPSW. We are now opening it to students who are in their higher education journey, giving them a firsthand look at how patient advocacy connects to […]

Epilepsy and seizures are a common issue affecting about 50-60% of babies and children with HIE (hypoxic ischemic encephalopathy), a condition that occurs when a newborn or child’s brain doesn’t get enough oxygen. This can result in different types of seizures, from more common and manageable ones to rarer and more challenging forms. Having epilepsy can be worrying, but it’s […]

In honor of Health Literacy Month, Hope for HIE’s Certified Child Life Specialist, Annie Gunning, shares helpful tips on how to incorporate play when building a child’s health literacy. What is a Child Life Specialist? Child life specialists are experts in child development and family dynamics, helping them navigate the emotional and psychological impact of hospitalizations, diagnoses, and life-changing events. […]

Bereavement and loss can be a hard topic to sit with, but it is one of the most important conversations our HIE community can have. In this Peer Perspective Series panel conversation, moderated by MSW intern Kimberly Taylor, four bereaved parents shared their children’s stories with honesty, tenderness, and even moments of laughter. They talked about the pregnancies and births […]

Children grow and change tremendously from infancy through adolescence. The skills we use to understand their development need to grow with them, too. For children with a history of HIE, developmental follow-up gives families and care teams opportunities to understand strengths, recognize areas where support may be helpful, and respond to a child’s changing needs over time. In the early […]

After an HIE diagnosis, families often find themselves learning an entirely new language: MRI. EEG. Sarnat score. Seizure burden. Basal ganglia. Watershed injury. Background activity. And behind almost every new term is the same question: “Does this tell us what our child’s future will look like?” These tools can give clinicians important information, but prognosis after HIE works best when […]

Families hear the phrase all the time: “We’re hoping for a good outcome.” Of course we are. But what exactly does “good outcome” mean? Well, it can mean something different to everyone. Each individual, family, clinician, and patient will have different definitions, values, and what matters most to that individual. In HIE research, it may have a very specific statistical […]

Words matter in HIE, and one distinction that can easily disappear in conversations about outcomes is the difference between: No identified disability and Mild disability or mild impacts. They are not interchangeable. Why Have They Been Grouped Together? Clinical trials need clearly defined outcomes. Historically, HIE research has frequently focused on major outcomes such as death, cerebral palsy, significant cognitive […]

For many children and adults with Hypoxic Ischemic Encephalopathy (HIE), communication can look different. Some may develop speech later than expected. Others may rely on gestures, sounds, or facial expressions to connect. And for many, speaking words out loud may never be the most effective or reliable way to share their thoughts, needs, and personalities. That’s where AAC — Augmentative […]

At Hope for HIE, we work to connect the HIE community with the researchers and clinicians shaping the future of HIE care. In the latest session of our Medical Advisory Board Educational Series, board member and HIE parent Melissa Akinlawon, MA, sat down with Dr. Mohamed El-Dib, MD, Director of Neonatal Neurocritical Care at Mass General Brigham for Children, to talk about […]