The NICU is a place no parent expects to be, yet for many families in our community, it's where their journey with HIE begins. Those early days can bring uncertainty, questions, and unexpected challenges, and the experience can feel overwhelming at times.
NICU Awareness Month is an opportunity to recognize these experiences, honor the resilience of families, and highlight what matters most—honesty, clear information, and the reassurance that families are not alone.
Awareness is about more than recognizing the medical care babies receive in the NICU—it's about recognizing the families who are living through it. When parents feel seen and included, they are better equipped to support their child and to advocate for the care they need.
A key part of supporting families is making sure they receive accurate, specific medical information about their babies. Families should never feel that information is being withheld because someone assumes "they can't handle it."
Communication is most effective when it is clear, consistent, and compassionate. Diagnosis, treatment plans, and next steps should be shared both verbally and in writing, using plain language that families can understand and revisit as needed. When families are included in this way, it fosters trust, supports shared decision-making, and gives parents a greater sense of confidence and agency in their child's care.
Too often, NICU stories have focused almost exclusively on prematurity. Yet over half of all NICU admissions are full-term babies, many of whom are diagnosed with HIE, strokes, or other conditions not related to prematurity.
Acknowledging the experiences of full-term families does not diminish the experiences of preterm families. On the contrary, it strengthens the NICU community by ensuring that all stories are valued, voices are heard, and resources are shared equitably.
When full-term families are left out of NICU messaging, advocacy councils, or speaking panels, their experiences are erased. That erasure compounds trauma and perpetuates stigma. If more than half of NICU admissions are full-term, then these families must also be represented in advocacy and awareness efforts.
When HIE is not named directly, families miss out on information and resources tailored to their needs. For HIE, it's appropriate for clinicians to use terms like "probable" or "possible" when causation is uncertain.
As more details emerge, care teams should provide increasing clarity—helping families understand distinctions between neonatal encephalopathy, HIE, stroke, metabolic disorders, or genetic conditions. Awareness requires honesty and inclusion—both in how we talk about diagnoses and in how we recognize every family's journey.
Families navigating HIE deserve care that goes beyond immediate treatment and addresses the full spectrum of needs, including:
Mark your calendars! Throughout the month, there are specific dates that offer opportunities to pause, remember, and honor the babies, families, and care teams along the NICU journey. Be sure to check out NICU Support organizations, like Project Sweet Peas and their NICU Awareness campaign, which offer meaningful ways for families and supporters to participate and give back.
Many HIE families begin their journey in the NICU. Below is a list of resources Hope for HIE has created to help families navigate those early days.
Professional Resources:
Annie Gunning, our on-staff Certified Child Life Specialist and Grief Counselor, provides developmentally appropriate support to help families navigate challenges, build coping strategies, and strengthen connection through meaningful activities and emotional tools—for parents, siblings, and extended family members.
These live Q&A sessions dive into the topics that matter most to families living with HIE. From the latest clinical updates and research breakthroughs to everyday challenges and questions that parents face, each session features providers across a wide range of specialties—offering trustworthy information, guidance, and a sense of clarity. We capture and publish the most important takeaways from each session on our resource blog and social media channels, giving families a clear roadmap for next steps and informed decisions.
We are able to connect you to resources worldwide, tapping into additional individualized and local programs to support your whole family along the way.
Peer Support Resources:
Be on the lookout each month for support groups designed to help you connect with other HIE parents who truly understand. Alongside our monthly Newly Diagnosed and Loss Support groups, we also host groups for specific demographics (like HIE dads and grandparents), mental health, and the many impacts and outcomes of HIE. Each group is led by our certified social worker, with support from experienced HIE parents, Peer Support Mentors, and HIE Hospital Ambassadors.
Hope’s Peer Support Mentor program connects families—whether they’re newly navigating an HIE diagnosis or further along in their journey—with experienced, compassionate, trauma-informed peer mentors. These trained parent leaders offer one-on-one or on-call emotional support, creating space for shared understanding, encouragement, and connection across a variety of experiences and backgrounds.
Our HIE Hospital Ambassador Program connects families with trained community members who understand both the hospital system and the HIE journey. As we grow our HIE hospital ambassador program to serve more regions, this program bridges the gap by offering guidance, local connections, and access to Hope for HIE’s ongoing resources, programs, and support.
Our HIE Peer Perspective series features experienced members of our community sharing insights and guidance. Led by Hope for HIE’s social worker, these offerings provide meaningful opportunities to connect, reflect, and explore important conversations together.
SOAR is a unique program designed to help children grow into their lives with HIE, fostering a sense of being seen, supported, and connected. Developed by Annie Gunning, Hope for HIE’s certified Child Life Specialist, SOAR was created in response to what many parents in our community have shared: the need for children to connect with peers who truly understand the challenges and experiences that come with HIE.
Siblings of children with HIE often carry a lot—they navigate challenges, manage big emotions, and sometimes cope with loss, all while figuring out their own place in the family. That’s why our Super Sibs program is designed just for them. Created by Annie Gunning, Hope’s Certified Child Life Specialist, these digital drops include engaging, age-appropriate activities and meaningful resources that celebrate each sibling’s unique strengths, honor their important role, and provide a safe, supportive space where they can grow and thrive.
For many families, the NICU journey doesn’t end at discharge. Having a community that understands what you’ve been through can make all the difference, and sometimes that means reaching out to organizations created just for NICU parents.
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Jen Schaefer, our on-staff social worker, offers families a compassionate and caring starting point by helping them navigate available support resources, foster connection, and build a strong foundation for emotional well-being across the entire family.