Betsy Pilon, President, Hope for HIE & NBS Board Member
In 2012, my first child was born. After a routine pregnancy with exceptional prenatal care, he unexpectedly stopped moving at 37 weeks gestation. He was born through an emergency c-section, intubated, assessed, and transferred to Henry Ford Hospital in Detroit to begin hypotermic cooling for 72 hours due to hypoxic ischemic encephalopathy.
I knew who was coming to get him. I had worked for the health system in marketing, and had met with the lead neonatalogist, Dr. Sudhakar Ezhuthachan, to develop some referral materials for the NICU. I was aware of the transfer protocols, but I was completely unaware at the potential for this type of complication.
After almost three weeks in the NICU, we were discharged into a “wait and see” vortex with very little support. While the NICU social worker did her best, there were no families she was aware of to connect me to, no organization for support, and everyone told me not to search on Google.
I did what any terrified parent does in this situation, I went home and immediately searched on the internet. I needed to know what life could look like. Would my marriage survive? Would we be able to have more children? Could I still have a career?
I found three blogs of families who had been through what we had. One who had a child with a mild outcome, one more moderate, and one more severe. All three referred me to a small Facebook group called Hope for HIE, which at that time had around 200 families connecting from all over the world. This quickly became my lifeline.
Since 2012, Hope for HIE has incorporated as a 501c3 nonprofit organization, and now serves over 5,000 families worldwide, providing hope in the darkness, a comprehensive peer-to-peer support network, on and offline opportunities to connect, and advocacy efforts to bring better awareness, education and support for families facing HIE.
Being a part of the Newborn Brain Society allows us to further our mission and find ways to move forward HIE care, better collaborate with the minds of medicine who are actively working on finding better treatments leading to better outcomes.
For more information on Hope for HIE, visit HopeforHIE.org.