Maybe Mama Gump went a little far “ensuring Forrest’s education” on a hot summer evening with the principal, but as a special needs parent, I watched Forrest Gump in a whole new light, after my son was born and diagnosed with hypoxic ischemic encephalopathy and cerebral palsy.
This life is a bit more complex raising and trying to empower a child with disabilities, and taking on a society that is still woefully behind on inclusion and accommodations to ensure equity. It’s a battle many of us fight with school districts, parks and recreation programs, and even the perceptions of our neighbors.Read more
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
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.
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.
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.Read more