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Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

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2024 Seizure Action Plan Awareness Week

2024 Seizure Action Plan Awareness Week

February 12th, 2024  | Advocacy  | Epilepsy  | News

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.

Community Driven Research: Dental Disparities

Community Driven Research: Dental Disparities

February 12th, 2024  | Advocacy  | News  | ORAL HEALTH

You may have noticed we are spotlighting the patient-family experience of impacts to dental and oral healthcare, and you’re right! Children with HIE are at greater risk for certain oral health impacts, and in the context of disability, there is a significant disparity experienced by medically complex children and families to access the same care as typically developing children. You […]

HIE & Cardiovascular Impact

HIE & Cardiovascular Impact

February 12th, 2024  | Advocacy  | News

February is Heart Month and Congenital Heart Defect Awareness Month. As with every other system in the body, Neonatal and Pediatric-acquired Hypoxic Ischemic Encephalopathy (HIE) can also impact cardiovascular health and function, and there’s also an overlap with Congenital Heart Defects and HIE (as well as other types of brain injury). HIE can negatively impact the cardiovascular system, either transiently […]

February is Full Term Awareness Month

February is Full Term Awareness Month

February 10th, 2024  | Advocacy  | News

February is #FullTermNICU awareness month. The majority of #HIE babies are born full term. Does it surprise you to learn that around 50% of #NICU babies are full term? There is a significant disparity in representation of full term families in #Neonatology research, family-centered care leadership, and QI. 99% of NICU family advisory councils are made up of #Preemie parents. […]

HIE Research Recap

HIE Research Recap

February 9th, 2024  | Advocacy  | News

It has been a busy week of new research being published and shared, and while we regularly share these in our Advocacy & Research group, this week seemed like a good time to post in one easily accessible area. As always, we share relevant research that is focused on the many aspects of HIE — decreasing the impact and incidence […]

SHARE YOUR HIE STORY

One of the ways many HIE families work through the trauma of their journey is sharing their story to help other families who will find us in their own HIE journey. We hope you’ll take a few minutes and share yours with us. We’ll publish it to our Family Stories blog!

Share Your Story

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