Shifting hope

For Julie Keon, hope was initially most intense in the early years of her daughter’s life.

Since then, her hope has shifted, but that doesn’t mean she is hopeless, Julie said.

“I have learned that hope is most intense in the early years but as life presents itself and you begin to settle in to how things will be. It doesn’t mean that I have become hopeless. It’s just that my hopes have changed and evolved,” she said.

 

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The power of hope

In the year since their daughter was born, hope has taken on multiple meanings for Justin and Gracielle Yan.

 

From the joy of seeing little Mila open her eyes to looking forward to her smile, hope has become an important part of their lives, Justin said.

 

“I could never have guessed how powerful that word would be for the next year of our lives: hope,” Justin said.

 

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No simple answers

After his son was born, Andy Chrestman quickly got a crash course in brain injury, and found there are no simple answers.

More than a year into their journey of trying to find answers, Andy and his wife Sarah came across Hope for HIE and found an instant community.

“The brain is the control center of our lives and when it is damaged, there are thousands of issues - some obvious, some less so - that you have to deal with. Getting answers to questions and finding common ground to dealing with these issues was very challenging. But when we found Hope for HIE, we finally found our community,” Andy said.

 

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Feeling at home

After her son was born, Lindsay Vanzandt just wanted answers.

She found medical journals, with tons of terms she didn’t understand. And then she found Hope for HIE, and so many other families just like hers.

“We immediately felt at home in the Facebook group, where we got more answers and more hope than we did at the hospital,” she said.

 

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Making a connection

After her daughter was born, Megan Ross was desperate for answers.

 

But all the doctors could tell her was that little Cari started having seizures 15 hours after birth due to suffering a loss of oxygen at some point before or during birth.

 

They had no idea what their future would hold.

 

“No doctor could tell us what she would be able to do. There was little information or direction on what to expect,” Megan said.

 

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Finding a purpose

Above the grief, the worry and the exhaustion, the loneliness was one of the strongest feelings.

For months, the words of doctors in the NICU rang in her head: “HIE is rare.”

All Annie Goeller could feel was alone.

 

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Remembering Will

His blue eyes lit up the room and his smile, though rare, was beautiful.

 

His life on earth was not long enough, but in his 17 months, baby Will touched so many lives, his mother Tara Oliver said.

 

Will suffered HIE after his mother’s splenic artery ruptured when she was pregnant, causing massive internal bleeding. Will was later diagnosed with a seizure disorder and Spastic Quadriplegia Cerebral Palsy.

 

After being hospitalized repeatedly for respiratory issues, Will gained his angel wings a day after he turned 17 months old.

 

 

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Finding the missing piece

For 7 years, Keira Chilvers had no idea other families were going through what she was with her son Zane.

Zane, who is now 12, suffered HIE at birth. After a rough start in the NICU, he was sent home and several diagnoses came in the years after, including epilepsy, cortical vision impairment, diplegia cerebral palsy, microcephaly, scoliosis and thermo regulatory dysfunction. But he is also a happy, clever kid with a great sense of humor, his mother said.

The Australian mom, she had no idea there were other families like hers until she stumbled across one on the internet, she said.

“I felt like I was reading our story, I can still remember how I felt. I was devastated another family was living our nightmare, but I was relieved and then sad to know we weren’t alone in the journey, too,” Keira said.

 

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Lifting the fog

After her son was born, Betsy Pilon left the NICU with a diagnosis of HIE, two pamphlets and the dreaded words of “wait and see” ringing in her headed.

 

Her son Max was born via emergency C-section after he stopped moving at 37 weeks and for five days was on a ventilator and was treated with the cooling protocol. Now, 4 years later, Max has developed spastic diplegic cerebral palsy and is a happy little boy who continues to make progress.

 

Betsy soon found Hope for HIE, where she was able to connect with other families who had been through a similar experience and had also been told they would need to wait and see how their little one progressed. She teamed up with a group of other parents to take Hope for HIE further, and create a nonprofit organization, as the original founders had envisioned.

 

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Enduring the Storm and Finding the Sunshine

After her son was diagnosed with HIE, Jill Uswajesdakul wanted to find other families like hers that she could connect with.

But when she asked about any groups or organizations that existed, no one knew of any. She doesn’t want other families to have that experience.

“Just someone to say ‘I’ve been there too,’ and there was nothing. It was very lonely and scary,” Jill said.

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