You don't want to be me

You don’t want to be me.

And I get it. There was a time I didn’t want to be me either.

 

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The latest in HIE treatment research

By Nick Burton

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In 2015, when our son, Grey, was born, there were not many interventions available to neonatologists to help lessen the brunt of an HIE injury.

In fact, we had to make a decision within our son’s first two hours of life to be transferred from what we thought was a high-level NICU to a nearby university hospital so that our son could receive brain cooling—the only option available to help protect his brain from further injury.

A week or so later, while our newborn son’s condition remained critical, an attending physician had a difficult conversation with me and my wife. She said, “we’ve gotten good at saving lives like Grey’s, but we haven’t caught up with what comes next.”

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Connecting over the miles

Two little boys with the same name and an HIE diagnosis were born days apart, but thousands of miles apart.

Once their parents met through Hope for HIE, those miles weren’t going to stop them from bonding and eventually meeting in person.

 

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Feeling like a Fraud

My Life as a Fraud

(Posted on behalf of the original author anonymously)


Most of my life I wore my heart on my sleeve. I was an open book and comfortable being authentic. I had two degrees and a successful marketing career. I made friends easily and was blissfully confident in myself and my abilities. I had always worked hard, tried to “do the right thing” and treat others well. Until I became a special needs parent with my second child.


We knew about the severe hydrocephalus before she was born. At six months I worked from home on bed rest after convincing my OBGYN that I was much better off doing my job from bed than consulting with Dr. Google for the final three months of my pregnancy.


We had to deliver her at 37 weeks due to the severity of the hydrocephalus and spent 6 weeks in the NICU. Her hydrocephalus caused some of the bones in her skull to fuse prematurely (craniosynostosis). She endured 4 brain surgeries by the time she was 6 months old. She wore a helmet to help reshape her skull after cranial remodeling surgery.

 

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Her First Set of Wheels

Her first set of wheels!

Emersyn has been so excited about getting her wheelchair, she has been telling anyone and everyone within ear shot.

The truth is we all have ideas about "disability" and what it means to be "disabled." What are your first thoughts when you see a person in a wheelchair? What about when that person is a spunky 3 year old? Many people are fixated on milestones and the thought of their child not being "typical" can be very challenging. I see it over and over again in our HIE community. What if my child can't walk? What if (gasp) they end up in a wheelchair?

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