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.
First, their lives were consumed with grief, then uncertainty, guilty and trauma.
Reeling from the grim prognosis for their daughter, who had suffered apnea and uncontrollable seizures 12 hours after birth, Melanie Riggins turned to the internet.
She was terrified at the words the doctor had told her: little to no quality of life. And she needed something to grab onto, some form of hope. But her searches didn’t turn up much.
“Those first frightening days turned into months. The unknown, the uncertainty, the guilt and trauma bled into our lives but, still, we reveled in each milestone met,” Melanie said.
A year into their journey, they found Hope for HIE. And they felt they finally had found home.
In the summer of 2014, I attended a writers’ workshop at The Mazza Institute at The University of Findlay, in Ohio. My mother, a retired school librarian, has gone to these children’s literature conferences for roughly 25 years.
She has encouraged me to go several times, and finally, I made the time. She has been my biggest fan, always referring to me as “a writer.” This was something I never called myself, since I didn’t consider entries in my high school diary or penpal notes to my grandmothers valid forms of writing. But I’ve always loved it, and decided I should expand my experience.
Her little girl in the NICU was the biggest baby there -- far bigger than the preemies in the other beds -- but Zoe was also the sickest.
Zoe had been resuscitated and placed on a cooling mat after she was born. She had suffered extensive brain damage, her mother Nina Young said.
“I couldn’t find anyone like me, the NICU was full of preemies and Zoe was so giant compared to them. She looked so healthy and strong by comparison, but she was the worst affected there,” Nina said.
Nina felt alone, and began looking for any support for families like hers, who also had an HIE diagnosis.Read more
Before she found a group of families whose children also were affected by HIE, Emmy Heaton felt alone.
She had joined other online groups, including one for children who had been cooled at birth, but many of the children there were mostly unaffected.
Emmy’s son, Aj, who is now 3, was initially given a very grim prognosis. Since then, he has been diagnosed with cerebral palsy, autism, developmental delay, and most recently epilepsy. He also has one of the cutest smiles in the world.
When Aj was about 6 months old, Emmy found Hope for HIE, and didn’t feel so alone anymore. She has support from around the globe.Read more