Epilepsy is one of the largest impacts from HIE, Hypoxic Ischemic Encephalopathy. Children across all outcomes can develop epilepsy, and HIE is a leading cause of several rare types of epilepsy such as Infantile Spasms, Lennox-Gastaut Syndrome, and ESES. Since seizures and HIE are so common, we recommend all families learn more about Seizure Action Plans, and go through Seizure First Aid training. Hope for HIE also supports all legislative efforts to improve the prevalence of Seizure Action Plans and Seizure First Aid through the Seizure Safe School campaign through the Epilepsy Foundation.
Thanks to participation of families from across the USA, we are pleased to report that the results from our latest Neonatal Seizure Registry study have been published in a top journal! We learned that, for children experiencing acute provoked neonatal seizures (i.e., due to brain injury), in most cases stopping anti-seizure medicine before a child goes home is safe. This […]
We are excited to announce a new Peer Support Mentor program. In this first phase, we are seeking roughly 6-8 experienced parents (2+ years out from diagnosis, and across various causes, outcomes, etc.) for this initial cohort to assist Newly Diagnosed families in their journey with HIE, and 2-4 experienced loss parents (loss occurring in the neonatal period as well […]
We continue building out the most comprehensive multidisciplinary group to advise us as we grow and fulfill our mission and are excited to announce the appointments of Dr. Alexa Craig and Dr. Brian Kalish to Hope for HIE’s Medical Advisory Board. Alexa Craig, MD, MsC, MS Dr. Craig is a neonatal and pediatric neurologist at Maine Medical Center, with areas of […]
This was the very first picture of Aiden we took. At the time he was intubated on life support, had IV lines with multiple drugs pumped into his system, placed under heavy sedation, and was on a cooling blanket being cooled into hypothermia to slow the metabolizing of his brain from the Hypoxic event in order to try and reduce […]
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