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

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Remembering Will

April 20th, 2016  | Family Stories  |  By ANN GOELLER

 

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.

After losing her son, Tara teamed up with parents who had lost their children to HIE to offer support to other families with the Hope for HIE Loss Support Group.

“It is close to three years since he passed away, and I think about him every day. Some days I smile and some days I cry,” Tara said.

“I try to live my days in a way that would make him proud, and I am constantly looking into new ways to honor his memory.”

Tara remembers the early days after Will was born, when all she could do was research the unfamiliar term of HIE. She was stressed, exhausted and blamed herself.

Then, she found Hope for HIE, where she found support from families worldwide, which continued after Will’s death, she said.

“I instantly felt relief that I had found others like me,” she said.

“I found comfort in hearing stories and advice from those who had been on the journey much longer than I had.”

And she found her own definition of hope had evolved. In the beginning, the only hope she could find was that Will would make a full recovery. Tara dove into researching any therapies she could find, and tried everything she could.

As time went on, it became clear that Will was more severely affected from his injury, she said.

“And it didn’t matter anymore that he didn’t come out ‘unscathed’. He was our Baby Will and to us, he was perfect. He was known and loved by people all over the world,” she said.

Tara’s advice to parents: Be kind to yourself. And enjoy your baby.

 

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