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 […]
For years, the word “mild” carried a reassuring implication in HIE: Mild HIE meant the baby would probably be “fine”. That belief shaped research, clinical care, and communication with families. Babies classified as having mild HIE were generally excluded from the original randomized therapeutic hypothermia trials because they were believed to have a favorable prognosis, without long-term data making that […]
For decades, age two has been one of the most important checkpoints in HIE research. There’s a good reason for that. It’s called the Bayley Scales of Development, and it’s the most commonly used assessment for clinical trials. By 18–24 months, clinicians can assess important areas of development, including motor, cognitive and language skills. Many foundational studies of therapeutic hypothermia […]
One of the first questions families ask after an HIE diagnosis is also one of the hardest: “What is my child’s outcome going to be?” It’s an understandable question. Families want to know what life will look like, what their child may need, and what they should prepare for. The difficult answer is that HIE doesn’t have one outcome. HIE […]
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