Navigating HIE: A Mother’s Fight, A Community’s Strength & A Mission to Support Families

SaveSavedRemoved 0

What if the first moments of your baby’s life didn’t go as planned? What if, instead of the joyful embrace of a newborn, you were thrust into a world of medical uncertainty and an unfamiliar diagnosis?

For Betsy, that moment changed everything. It was the start of a journey she never expected—one that led to not only advocating for her son Max but also leading a community for thousands of other families facing the rare and complex diagnosis of Hypoxic Ischemic Encephalopathy (HIE).

In our latest podcast episode, Betsy shares her powerful story—from the hours in the NICU to her role today as the executive director of Hope for HIE, a nonprofit dedicated to supporting families like hers. Through her resilience and determination, she has transformed her own experience into a movement that brings education, advocacy, and hope to others.

🎧 Listen to the full episode here.

The Unexpected: A Birth Story That Took a Drastic Turn

Betsy’s pregnancy had been smooth. Like many first-time moms, she followed every guideline, attended every appointment, and eagerly anticipated her baby’s arrival.

But at 36 weeks, something changed.

Max’s movements seemed different.
Her belly, once firm, felt softer.
A gut instinct told her something wasn’t right.

A late-night call to labor and delivery led to reassurance—try kick counts, monitor movements, and follow up if things still felt off. But within days, an emergency C-section became the only option.

When Max was born, he let out a small cry before being rushed away to be intubated. Betsy barely had time to process what was happening before doctors explained that her newborn son would need immediate cooling therapy—a treatment designed to slow the body’s processes and reduce potential brain damage caused by lack of oxygen.

💡 She didn’t even know HIE existed. Now, it was the defining moment of her child’s first days.

A Crash Course in the NICU: The Reality of HIE

The NICU is a world of constant beeping monitors, medical jargon, and emotional roller coasters. For Betsy and her husband, Mike, those first few days were filled with questions no parent expects to ask:

Will our baby survive?
Will he ever breathe on his own?
What does this diagnosis mean for his future?

Max was hooked up to an EEG, intubated, and covered in wires. And while cooling therapy gave them hope, it also left them with endless uncertainty.

“I remember the doctors telling us, ‘We just have to wait and see.’ But as a parent, waiting feels impossible.” — Betsy

During those long nights, Betsy clung to the small victories—Max opening his swollen eyes for the first time, the moment he was extubated, the slight movements that showed he was fighting.

The MRI That Changed Everything

After 72 hours of cooling, the next step was the MRI—an inside look at what had happened to Max’s brain.

The results were devastating: moderate to severe brain injury.

“We were all hoping for something different,” Betsy recalls. “But our neurologist reminded us—this is just one picture. It doesn’t define his future.”

Max was at risk for cerebral palsy, intellectual disabilities, and unknown long-term effects. But his doctors encouraged them to focus on what they could do now—early intervention, therapy, and most importantly, love.

From NICU to Advocacy

When Max was finally discharged from the NICU after three weeks, Betsy felt an overwhelming mix of relief and fear. She was taking her baby home, but there were no clear answers about what lay ahead.

So she did what any parent would do—she searched for others who had been through the same thing.

What she found changed her life.

She discovered Hope for HIE, a small but growing online community of parents who had walked the same path. And in that space, she found what she had been missing—support, understanding, and resources that simply didn’t exist in the hospital.

As she connected with more families, one thing became clear:

👉 No parent should have to navigate HIE alone.

That realization led Betsy and a team of dedicated parents to turn Hope for HIE into a nonprofit—an organization that now serves over 7,000 families worldwide.

✅ Providing education and advocacy for HIE awareness

✅ Connecting families to a network of peer support

✅ Sending newly diagnosed support boxes to NICUs

✅ Working alongside researchers to improve outcomes

✅ Families have access to a Child Life Specialist and Social Worker for additional support

Because no family should ever leave the hospital feeling as lost and alone as she once did.

Max Today: A Life Defined by Possibilities

Fast forward nine years, and Max is thriving.

He plays basketball and baseball.
He loves Harry Potter and telling jokes.
He’s a big brother to Emily and an expert at making her laugh.

Yes, HIE is still part of his story—he has mild cerebral palsy, vision impairments, and recently developed epilepsy. But it does not define him.

Betsy’s journey has shown her that while HIE changes things, it doesn’t take away the joys of childhood, the strength of families, or the power of community.

💡 And through Hope for HIE, she’s making sure every parent facing this diagnosis knows they are not alone.