Three Years Into the Journey

What I wish I understood 3 years ago when I boarded on this journey:

I wish I knew that I would cope no matter how tough it gets

That I should have enjoyed my baby every second instead of worrying about the future that I couldn't stop or change

That I would love her no matter what

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Fulfilling our mission

Part of our mission at Hope for HIE is advocating for our community in many ways.

Last year, we worked with an amazing group of researchers at Neobrain in Canada on an educational video for parents in the NICU, whose child had suffered an HIE event and their baby was set to go through cooling.

Now, we are teaming up again on a new study, and we are excited about the possibilities.



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Getting fitted for orthotics

For some of our HIE children, some type of orthotic (sometimes called a brace) may be necessary to help with development, ambulating and balance. There are a few different types of orthotics that may be considered. For some children, simply a shoe insert might be a good tool. For others, a solid or articulated (hinged) Ankle-Foot orthosis (AFO), or a short Supra-Malleolar Orthosis (SMO) might work best.


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That First Year - A Dad's Perspective on Getting Through


Hope for HIE is a wonderful organization full of other dedicated families in similar situations. Every day new parents join on Facebook or read this website full of questions, uncertainty, and searching for hope. Maybe you got here because you searched for "What is HIE? Hypoxic-Ischemic Encephalopathy."

I feel like I’ve gained some perspective on what our process was like regardless of the results.

It's only fair to share that many of the answers you are seeking can't and won't be known for some time by anyone. The laundry list of "What HIE Can Cause?" is longer than any parent would like to read but what is critical for you to hear is that every situation is unique.

And that's why I'm taking time to write this blog post. So many other parents and I are in your shoes, not in the past tense kind of thing because we all learn that it's an ongoing process.

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Connecting through loss

A devastating loss suffered by two families brought them closer together than they could have ever imagined.

Becky and Krista connected through Hope for HIE’s online forums over the loss of their children to HIE. They got even closer when discussing the fears of having another baby after the trauma they had both had in their previous birth experiences.



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