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.
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.
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.
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.
When Karissa Shepherd’s son was born and she saw the words Hypoxic Ischemic Encephalopathy in his records, she turned to the internet.
The Australian mom found a small Yahoo support group and a blog by one of the Hope for HIE founders. When a Facebook group formed, Karissa was one of the first members.