Hope for HIE Parent Support Hub – The Heart of our Support Network Hope for HIE connects over 7,000 families through over 100 topic, location and outcomes-based support groups here on Facebook. What has traditionally been called the “main parent forum” is now called the Parent Support Hub. This group is the HUB of activity, and the heart of our […]
There is a cohort of kids who will persistently need medications out of the NICU, and there are children who will not have persistent seizures, or experience neonatal seizures at all, but develop epilepsy later in childhood. There are a few nuances for what is most typically seen with these epilepsy cases, and some things to ask about (some of […]
What do families need to know when they are getting discharged from the NICU after HIE about epilepsy? A few things! HIE is the top cause of neonatal seizures, and can lead to various more common, and rare, seizure disorders and epilepsy. Knowledge is empowerment, during a time where things feel very much out of control. We think of empowering […]
Knowing seizure first aid is something EVERYONE should know. Just like becoming CPR-trained, it’s a skill you hope you don’t have to use, but glad you’ll have it if you do. The Epilepsy Foundation offers two tracks for getting seizure first aid trained – one is a 30 minute OnDemand course, offered online and fully accessible 24/7, and one is […]
Join us as we share the stories of Julie Makow and Margie Jones, two HIE moms, who connected through Hope for HIE on the road to kidney transplants for their children. With acute kidney injury and HIE, many children may have impacted kidney function. While Julie and Margie did not leave near each other, through Hope for HIE, they were […]
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