Navigating an HIE diagnosis is its own complex journey—and for some families, that path eventually leads to a second diagnosis: autism. In this Peer Perspective panel, Hope for HIE social worker Jen Schaefer was joined by community members Crystal F., Kacie M., and Crystal E., who shared their lived experiences at the intersection of HIE and autism. Together, they explored […]
Hope for HIE is excited to announce the addition of Samia Tasmim to the organization as Research Associate. Samia brings an extensive background in research, medical writing, and science communication to the role. She will be supporting key organizational priorities including the PCORI Convening Award, research partnerships, and the HIE Registry. She will also help advance Hope for HIE’s efforts […]
Access to mental health support and resources is critically important for families who find themselves in the NICU and PICU. Parents whose children are admitted to the NICU or PICU have a 45-50% greater incidence of mental health disorders such as PTSD, Anxiety & Depression. There also remains significant inequity for non-white, non-preemie, non-maternal patients and families in the NICU, […]
Every April, HIE Awareness Month serves as a perfect time to elevate the voices of our community and our families. By sharing our stories and experiences with one another, we help to shape research and support services, and we build a stronger community and light the path brighter for the families to come. These spotlights share a small part of […]
When a baby is diagnosed with hypoxic-ischemic encephalopathy (HIE), families and medical teams enter one of the most intense experiences of their lives. Every monitor, every scan, every decision carries enormous weight. And then, eventually, discharge day comes — and for most families, the sustained attention of the medical world quietly moves on. For researchers and clinicians, there’s a parallel […]
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