Every HIE journey is different — and yet, there are powerful threads that connect families across experiences, diagnoses, hospitals, and years. In this Peer Perspective Series conversation, Brigid and Ana, both mothers of children with HIE, shared their lived experiences as full-term NICU families and how those experiences shaped their paths into advocacy, healing, and connection.
Their stories remind us that advocacy doesn’t always begin with a microphone or a committee — often, it begins with survival, grief, and learning how to take the next breath.
We're sharing the key notes from the Peer Perspective Panel, along with a link to the full video on YouTube.
Both Brigid and Ana shared a common experience of feeling like they “didn’t belong” in the NICU. With full-term babies surrounded by premature infants, they often encountered confusion, silence, or dismissal — even from well-meaning professionals.
And yet, HIE families do belong.
Whether your baby is born at 24 weeks or 41 weeks, whether your NICU stay is days or months, the trauma, fear, and uncertainty are real. There is no hierarchy of pain in the NICU. Every family deserves support, validation, and resources — during the stay and long after discharge.
One of the most consistent themes was how abruptly support can fall away after leaving the NICU — especially for full-term families.
Brigid shared how, despite her child’s severe medical start, there were no clear post-discharge resources offered because her baby was “full term.” Ana echoed this isolation, describing how much energy went into caring for her daughter that there was no space left to care for herself.
The transition home can be jarring:
This is where peer support, mental health care, and organizations like Hope for HIE become lifelines — not luxuries.
Both moms described being thrust into a world of unfamiliar words:
Hypoxic-ischemic encephalopathy. Therapeutic hypothermia. Seizures. MRI findings. Prognosis.
Families often become experts quickly — not by choice, but by necessity. Advocacy frequently begins here: learning, asking questions, correcting misconceptions, and sometimes even educating medical professionals who may not regularly encounter HIE.
And while being told your child is a “miracle” can feel validating, families also need providers to see, and treat, the child in front of them, not just the diagnosis or the survival story.
Neither Brigid nor Ana set out to become advocates. Advocacy grew organically from moments of pain, frustration, and injustice:
Advocacy took many forms:
Every form matters.
One of the most important reminders shared was this: self-care is not selfish — it is survival.
For NICU and HIE parents, advocacy doesn’t have to mean doing more. Sometimes it means:
Putting on your own oxygen mask first is not optional. It’s essential.
Healing is not linear, and readiness for advocacy looks different for every family. It’s okay to take baby steps. It’s okay to pause. It’s okay to say “not yet.”
Perhaps the most hopeful takeaway came from looking forward — not back.
Both Bridget and Anna reflected on how often they were told, “We don’t know” in those early days. And while uncertainty never fully disappears, time has brought perspective, resilience, and joy.
Their children are now four and almost eight. Vibrant, complex, “spicy,” and deeply loved.
Their lives are proof that:
If there is one message woven through every part of this conversation, it’s this:
There is a community for you.
Whether you are newly diagnosed, years into your journey, a full-term NICU family, or somewhere in between — Hope for HIE exists so no family has to walk this path alone.
Connection can begin with:
And sometimes, that connection becomes the spark that helps another family survive their hardest day.
Thank you to Brigid and Ana for sharing their stories, their vulnerability, and their advocacy — and for reminding us that even in the most uncertain beginnings, hope continues to grow.
To watch the full Peer Perspective Panel or to read our key takeaways at a glance, click the buttons below!
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