Life can be pretty overwhelming when your precious child receives the diagnosis of hypoxic ischemic encephalopathy (HIE). Your hopes and dreams of motherhood shift, and your life is intensely focused on therapies, doctor appointments and research. You wonder how people are able not only to attend all of these appointments, but also manage to implement the slew of home programs that occupational, physical and speech therapists hand out. And what about actually having the time to enjoy motherhood?
The first 18 months of my son Max’s life were spent this way. I cried almost every single day during that time. I grieved the loss of control, the loss of what could have been, the rough start, the new normal we were forced into. I also made sure we attended every appointment, asked a multitude of questions, implemented every home program and researched every single mainstream and alternative treatment, no matter if they were applicable to my child or not. All in an effort to find to find a “fix.”Read more
Every day, we face questions and search for answers that will help us on our HIE journey. Whether you're new to HIE, or a seasoned veteran, our resource area is a great place to find helpful information.
Our resources will help you think about the questions to ask, and the choices and options to consider on your HIE journey.
Here, you'll find tools, links to local resources and maybe even a few tips/tricks to make life easier. All of our content is gathered, written and developed by other HIE parents and family members.
Please remember that not all information will be specific to you or your family. These resources shouldn't replace any medical advice or direction you may receive from your professional caregiving team. This is simply a place where we can share our resources and develop a listing of everything from therapies to educational reading and self care.
Resource Blog - Posts are updated regularly and are sent in by HIE parents all over the world. Do you like to write? Have a topic you have some knowledge/experience with? Want to tell us your story? E-mail our Website Manager.
Printable Resources - Handouts, flyers and contact cards you can pass along to your local hospital, social worker/case manager, education advocate or medical professional. In the meantime, be sure to ask your providers to add Hope for HIE's website to their resource directory so more families can find us!
Community Programs - For all United States members - you can begin here to find your state's Parent to Parent resource office for community-based services. International members are encouraged to submit their favorite website or government sponsored program to our Website Team. We're very interested in having a full listing of all the important services worldwide.
Recommended Foundations - We endorse and partner with a variety of community organizations. We encourage parents and caregivers to use those listed for additional information and education about their child's specific diagnoses.
Family Blogs We Love - Everyone has a favorite online reading list. This is ours! You won't be shocked to know that many of them are members of our HIE community.