Having a baby with HIE quickly became isolating for one mom, who desperately was looking for support.
Nicolette felt like she was drowning, trying to process emotions she couldn’t even put words to in a world she never knew existed and didn’t understand, she said.
A social worker told her about a Facebook group where she could find support called Hope for HIE.
There, she found friendship. She found support. She found resources. She found a place to share the highs and the lows of their journey with people who understood.
“Suddenly we weren’t so alone. Someone was always there to answer our questions and there were many times I got answers to problems the doctors didn’t have,” Nicolette said.
Her daughter, Faith, is now two and a half. She is severely affected, with a slew of diagnoses ranging from epilepsy, chronic lung disease, cerebral palsy and cortical visual impairment, and hospitals stays are a routine in their family.
But she is also a fighter, who is almost always happy and loves her family fiercely, her mother said.
More than two years into her journey, Nicolette still relies on her HIE family for support often. She gets tons of resources and information, but she also gets camaraderie.
“Families in the group have become like our own family. We laugh and cry and rejoice together,” she said.
“We need a judgement-free zone where we can ask the hard questions and vent the things nobody else would understand. We need a place where people won’t look at our children with pity but see them as the amazing wonderful beautiful little people they are.”