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 […]

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 […]

Learning and attention challenges are prevalent in our community. While early identification is possible between the ages of 3-5, most children are not able to be identified until ages 5-8 because of how the brain develops, and when higher order thinking and learning begins to happen. The incidence is estimated roughly 40% of those who do not develop cerebral palsy, […]

In honor of NICU Awareness Month, Hope for HIE’s Certified Child Life Specialist, Annie Gunning, shares a favorite book and simple, meaningful ways to help big brothers and sisters feel connected to a baby in the NICU. What is a Child Life Specialist? Child life specialists are experts in child development and family dynamics, helping them navigate the emotional and […]

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 […]

September is NICU Awareness Month, a time to recognize the babies, families, and care teams whose lives are shaped by their experiences in the neonatal intensive care unit. On September 26, NICU Remembrance Day, we pause to honor the babies who died in the NICU and the families who carry their memory every day. For many families affected by HIE, […]

Please join us in welcoming Mitchelle Rao, the newest member of our Peer Support Mentor team! Mitchelle is an HIE mom living in Nairobi, Kenya, and her training brings us one step closer to making sure families across the globe have someone to talk to that understands. Read on to get to know Mitchelle, her son Jed, and the path that […]