Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy


A new community

November 22nd, 2016  | Family Stories  |  By ANN GOELLER


Throughout our lives, we form communities.

Our hometown, our cliques of friends in school, our co-workers, our couples friends and then the families we want our kids to grow up with.

I have been a part of some amazing communities in my life. And when my daughter suffered a birth injury, hypoxic ischemic encephalopathy or HIE, I needed another one in my life.

From those first moments in the hospital after her birth to the NICU bedside at another hospital, one of the feelings that was strongest was loneliness. We were told our little girl’s injury was rare, and we would struggle to find others with it.

HIE occurs in 2 to 3 of every 1,000 live births. So while rare, it is not as rare as we first thought.

I learned that a few months into our HIE journey, when one sleepless night I finally had the courage to turn to the internet to search for what resources were available for families impacted by HIE.

That’s when I found Hope for HIE, which at the time was a few hundred families on a closed Facebook group. And immediately, I found my new community, one I never knew I needed so much.

Immediately I wanted to read every family’s story for some sort of look at what our future could look like. I had so many questions — how can I stop my baby from constantly vomiting? Why does she arch back so hard? What does a seizure look like? — and I finally had a place to ask them.

But as time went on, that community took on a whole new importance to me when I started meeting some of the other HIE moms in person, and then their spouses and children.

For me, the connections I have made through Hope for HIE have been nothing less than life changing.

I still need the love and support of the friends and family who have been there since long before I was even pregnant. Without them, I could not have made it this far.

But they can’t, nor do I want them to, understand every aspect of our life. And my HIE community can.

And that is more important than I ever knew it was, until I was a part of it. These families have led me through tough times and boosted me to keep fighting, even when I’m not sure I can.

That is a big part of the mission of Hope for HIE, providing support for families impacted by HIE. That support comes in the form of packages for families in the hospital to yearly retreats for parents of children with HIE.

I have seen this support from both sides, from new HIE parents at some of their lowest points, to families more experienced in their journey — like me — who are so grateful to have a purpose and a way to help others.

And I can tell you, your support truly makes a difference.



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