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 […]
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 […]
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