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.
Through Hope for HIE, they have found families like theirs, advice from those who know and, most importantly, support.
“I have connected and made powerful friendships, learned how to be a more powerful advocate for my daughter. In this home, I've found a family that celebrates triumphs and lifts us through dark days. All of these things have helped my heart to heal and push us forward into this uncertain journey,” Melanie said.
Pregnant with their second child, Melanie needed that support again before going down the same path again.
“Any other person or community would just not have been the same. The future doesn't seem so vast, so scary, so uncertain when I know we are surrounded by an army of hope to carry us through it,” Melanie said.
The grief HIE parents share is isolating and unexpected, she said.
Parents are given a diagnosis, a little bit of information, and then sent on their way. That’s why Hope for HIE is so important, she said.
“Had HOPE for HIE been there in those first days of our daughter's diagnosis, I'm confident the HOPE in the journey would have been our immediate rescue,” Melanie said.