I found a new group of parents last week, ones going through the same thing we are going through with Vivian.
Parents of other children who have hypoxic ischemic encephalopathy, or HIE. Vivian’s primary diagnoses is HIE. I haven’t really talked much about it here because we were so focused on treating her infantile spasms (IS), we haven’t had much time to actually look to see what support there is for parents of HIE kids.
The group I found is a support network called Hope for HIE and they have an awesome Facebook group that I am so glad I joined. They also have a long list of subgroups and other Facebook groups centered around HIE, like one specifically for parents who have a child with a new HIE diagnosis and another one just for Dads. It’s a very extensive network.
It’s really refreshing to be in a group with parents who have the same questions we do. Who have the same “what if” worries that we do. I wish that I had found them a lot sooner! There is a wide spectrum of severity with HIE, so obviously each child will have their own unique journey, but there are so many who are traveling down a path parallel to ours.
I want to help spread the word, so this post is more for search engines and parents who are Googling after receiving what could be the worst news they’ve ever gotten. New parents who planned their trip to Italy, but who ended up in Holland.
There is hope. It will be OK, even if right now you can’t see how it could ever possibly be OK. Don’t be afraid to reach out and ask for help.