When your child is diagnosed with neonatal or pediatric-acquired Hypoxic Ischemic Encephalopathy (HIE), one of the most difficult parts of the journey is learning to live with uncertainty. From the earliest days in the NICU or PICU, questions about outcomes, therapies, and development are common, and there are often no clear answers because of the nature of HIE and brain development. This uncertainty can feel overwhelming, isolating, and exhausting. Parents of course want a crystal ball to help them see what the future holds.
While some diagnostic tools can help with giving a prognosis early on with what might happen as a child grows and develops, every parent faces the unknown with the HIE "wait and see".
The good news? You are not alone, as this is something each parent must face with HIE. There is no prognosis set in stone for your child's future, as it's difficult (in a good way!) to predict how a baby or child may recover and overcome their HIE. And, there are ways to cope with this traumatic time and unknown future.
Why Uncertainty Is So Hard
Uncertainty taps into our deepest fears—about our child's future, about our ability to help them, and about whether we’re doing enough. Research shows that uncertainty in pediatric neurodevelopmental conditions, like HIE, is linked to higher levels of anxiety, depression, and distress in parents. And it makes sense: when outcomes vary so widely, and progress often unfolds on a non-linear timeline, the waiting itself becomes a kind of trauma.
You're busy learning a whole different language that you didn't expect would be a part of your life. Things like early intervention therapies, specialist appointments, and tracking milestones becomes your norm. And with that, comes a lot of uncertainty, especially in the first year with HIE.
So, how can you manage these feelings and balancing all that comes with HIE? Here are a few different suggestions that come from parents and professionals.
Coping with Uncertainty - Strategies that Can Help
Acknowledge and Address Emotions: Parents often experience shock, denial, sadness, guilt, anger, and a sense of loss for their envisioned "perfect" child. It's crucial to acknowledge these feelings and seek support to process them. Hope for HIE offers comprehensive support resources, programs and services, including a social worker, child life specialist, and trained peer support mentors.
Focus on the Present & What You Can Control: While it's natural to worry about the future, focusing on what your child is capable of now can be more productive and help manage uncertainty. One mother shared the quote, “Be where you are, not where you think you should be,” which resonated with her journey through HIE.
Practice Tolerating Ambiguity: It’s okay not to have all the answers. HIE is a marathon, not a sprint. Long-term outcomes are most often very difficult to predict, especially for mild-moderate outcomes in the first two years. One evidence-based tool, Acceptance and Commitment Therapy (ACT), teaches skills to accept what we can’t control while staying grounded in our values—like advocating for our child or being present during play.
Seek Clear and Compassionate Communication: Parents value open and honest communication about the diagnosis, potential outcomes, and care plans. Work with healthcare professionals who take the time to explain HIE and its implications, answer questions and provide resources. Don't be afraid to ask for a second opinion, and also ask about other resources your medical team may have such as palliative care, or care coordinators.
Connect with Support Systems: Finding a community of other parents navigating HIE can offer invaluable emotional and informational support. Hope for HIE provides support groups, including online forums, weekly video support groups, and peer mentorship programs, where parents can connect and share experiences.
Seek Professional Mental Health Support: Therapists experienced in parenting medically complex children, grief and trauma can help you build coping strategies and reduce anxiety. Telehealth options for better access can be incredibly helpful for all families facing HIE. If you are consistently spiraling about the uncertainty, trained therapists can help! Hope for HIE's social worker can help you find a qualified therapist in your area, financial resources to work with a therapist, and more. Head to HIE.Support and fill out the support request form.
Develop Resilience: Resilience is the ability to adapt and maintain hope in the face of hardship. Strategies for building resilience include focusing on what you can control, cultivating a support system, practicing self-compassion, and developing a growth mindset.
Be Strategic with Information: It’s tempting to spend hours online searching for answers. But constant research can backfire. Instead, set time-limited “research windows” and prioritize reliable sources. Make space for trusted uncertainty—it’s okay not to have all the answers right now.
Anchor Yourself in Celebrating the Wins: Recognize that every child's journey is unique and focus on individual progress rather than comparing to others. Whether it's an inchstone, or a milestone, having a better day, or a good one, acknowleging and honoring each small gain can help stay grounded in the now, and remind us that progress is real. It's ok to enjoy your baby/child. You won't miss something!
Take a Break, Humor is also Medicine: Don't be afraid to find humor in challenging situations, and engage in activites that provide temporary emotional release or a break from all the feelings that come with HIE. Parents often talk about losing themselves in caregiving. It's so important to recognize your individual needs of connections in and out of the HIE community, activities you enjoyed before HIE, and finding new ones after.
You're Doing Enough
There’s no one right way to handle uncertainty, and there’s no guidebook parenting your individual child through HIE. But showing up, seeking support, and adjusting along the way is doing the work.
You’re not expected to have all the answers. While the path ahead may not be fully clear, you don’t have to walk it alone.
Support Resources:
Hope for HIE has a comprehensive support network with programs, services, support group events, and specific places for newly diagnosed families to connect and feel supported. There are also other helpful organizations and resources available to families facing HIE.
HIElights of Hope is Hope for HIE's community anthology of over 60 stories across the wide spectrum of outcomes and impacts. Each story has its own definition and version of HOPE, intentionally chosen to ensure families found representation in a variety of stories.
This book can be found in print via Amazon publishing, on eBook, and all stories are available on the blog.
