After four months of feeling alone, worrying and wondering, Anika Fella decided to try to find other families like hers, who had gotten the diagnosis of HIE.
Her daughter Chloe had suffered HIE when she separated from the placenta during the delivery of her twin sister. To their family, HIE had so far meant more than a month in the NICU, tubes hooked up to their baby girl, beeping machines and never-ending worry.
Anika was a member of some twin parent groups online, and wondered if there was even a slim chance there would be resources and support specifically for HIE families. And then she found Hope for HIE.
Immediately, she was no longer alone.
“The small percentage of births that end in HIE is so small that you feel like you must be the only one, and I found that I was not,” Anika said.
She found families like hers, with similar birth stories, family structures and lives. And in them, she found hope. HIE did not end their lives, she said.
“I met parents who still lived life, they took vacations, they ventured for weekend outings, they had birthday parties, they had smiling pictures,” Anika said.
And she found a purpose: helping other families, especially ones new to the HIE journey. She remembered those early days so well, filled with loss and confusion, and she wanted to help.
She did research and shared what she learned. When they tried a new therapy, she shared it with her fellow HIE families. When she found something that helped with stress, she told her fellow parents.
“I became one with these families, getting to know the parents and their children. I could feel my sadness lifting as I supported other people,” Anika said.
If she hadn’t found Hope for HIE, Anika knows her worries would have consumed her. But when she is offering support to a fellow family, she is also helping herself.
“Over the past few months, I have offered so many words of support and hope that I have begun to believe them myself. How can I tell a family that life will go on if I didn't believe it myself?” she said.
And on the days when she needs some extra support, whether that is to vent about her frustrations and worries or let down her guard just a little, she has somewhere to go. Through Hope for HIE, she found other families who just get it, even when her friends and family simply can’t.
“They never see the bathroom cries, the red eyes in the car, the tear stained pillows at night. They don't know the anxiety that fills you and keeps you awake at night over something which you have no control, and my HIE family knows this and not only do they know this, they tell you it's ok and that it's normal to feel this way,” Anika said.