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Navigating Parental Mental Health: Peer Perspective Key Takeaways

June 10th, 2026  | News  | Peer Perspective Series  | Resources  | Self Care  | Therapy

 

Parenting a child with HIE is one of the most emotionally complex journeys a family can face, and yet conversations about parental mental health are still too rare. In this Peer Perspective Series panel, three HIE parents opened up about their own mental health journeys with honesty and vulnerability. Follow along as we highlight the key takeaways that Kat, Ravi, and Kori shared in this panel discussion.

As with all Peer Perspective conversations, this panel is not medical advice. It's simply one community sharing what has helped—so no one has to figure it out alone.

We're sharing the key notes from the Peer Perspective Panel, along with a link to the full video on YouTube.

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The HIE Journey Takes a Toll on Parents Too

The focus early on in an HIE diagnosis is rightly on the child, but the trauma parents experience is real and it doesn't resolve on its own.

• The NICU is a place of constant uncertainty and parents are often absorbing devastating information while also managing their own physical recovery, caring for other children, and trying to hold everything together.
• "Wait and see" is a phrase that follows HIE families well beyond the NICU. For many parents, the hypervigilance that begins at diagnosis doesn't simply turn off—it quietly becomes their baseline.
• Trauma doesn't always arrive all at once. For some parents it's a sudden onslaught; for others, a slow drip of difficult news over weeks or months. Sometimes it will resurface with a new diagnosis. Either way, the impact is significant and deserves attention.
• Many parents spend so much energy focused on the next milestone, the next appointment, the next step for their child that their own needs go unaddressed for months or years.

Recognizing that you are carrying something heavy is the first step. You don't have to be in crisis to deserve support.

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There Is No Single Path to Mental Health Support

Mental health support doesn't look the same for everyone. Our panelists shared some of the mental health supports that they've tried while navigating an HIE diagnosis:

Therapy

Therapy is a valuable tool, but finding the right fit takes time. Different modalities—talk therapy, EMDR, cognitive behavioral therapy—work better for different people, and it's normal to try more than one approach.

Medication

Medication can be a meaningful part of managing anxiety, depression, or trauma responses. It may take time to find the right balance, and that's okay.

Writing and journaling

Writing and journaling offer a way to process experiences that are hard to say out loud and can be a powerful outlet for parents who aren't ready for formal therapy.

Community connection

Whether through a support group, the Hope for HIE online community, or even connecting with another parent who gets it can provide relief that professional support alone sometimes can't.

Some parents reach a place of readiness for support quickly while others may take years. Both paths are valid.

There is no one right way to take care of yourself. What matters is finding something that works for you and giving yourself permission to try, adjust, and try again.

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Fathers and Non-Birthing Parents Are Often Overlooked

The mental health needs of fathers and non-birthing partners frequently go unacknowledged by the medical system, by those around them, and sometimes by themselves.

• Non-birthing parents are often thrust into the role of decision-maker at the moment of diagnosis, absorbing critical medical information alone while simultaneously worrying about their partner and their child.
• The expectation to "hold it together" for everyone else can make it difficult for fathers and partners to recognize or admit that they are struggling too.
• Support systems tend to rally around the birthing parent. Non-birthing partners often find that no one thinks to check on them.
• Many fathers don't begin to address their own mental health until years after their child's diagnosis, often only after they feel their partner has stabilized enough that there's finally "room" for their own experience.

Fathers and non-birthing partners experience this trauma too. Their need for support is just as real, even when the system doesn't make that visible.

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Your Support System May Look Different Than You Expected

Well-meaning loved ones don't always know how to help, and that's okay. But finding people who truly understand can make a big difference on this journey.

• Friends and family who haven't lived the HIE experience may default to reassurance: she looks great, you're doing amazing, try not to worry. That can feel isolating when you're living with real and complex fears.
• People with healthcare backgrounds (therapists, occupational therapists, speech-language pathologists) often have an easier time validating the reality of what HIE families are navigating.
• The Hope for HIE community itself is often the most powerful source of support. Connecting with parents who don't need a preamble and who already understand the weight of "wait and see" can provide understanding that's hard to find anywhere else.
• Support can come from unexpected places: an early intervention specialist, a therapist, a stranger from an online group who becomes a close friend.

Finding your people is critical. Connection isn't a luxury on this journey, it's a lifeline.

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What Providers Say (and Don't) Has a Lasting Impact

How providers communicate in the early days of an HIE diagnosis can shape families' emotional trajectories in ways that extend beyond the NICU.

• Parents are absorbing life-altering information at the same moment they are in acute shock. What gets said, and how, can stay with them for years.
• Providers who offer something concrete to hold onto, who frame uncertainty with hope rather than only potential outcomes, give families a foundation to stand on during a profoundly destabilizing time.
• When provider communication is unclear, rushed, or incomplete, parents often spend months piecing together their child's story on their own, which can add to their anxiety and erode their trust in medical providers.
• Nurses, therapists, and support staff sometimes play a critical role in bridging gaps that physicians leave, such as a hallway conversation, a moment of encouragement, a referral to a resource.

When provider communication falls short, it's not a reflection of your ability to understand. Asking questions, reading your child's records, and finding providers who will meet you where you are is both valid and necessary.

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Mental Health Is an Ongoing Journey, Not a Destination

For HIE parents, mental health isn't something to address once and move on from. It's something to tend to over time. Years in, the work isn't over, but it does shift.

• Anniversaries, birthdays, and hospital-adjacent experiences can resurface grief and anxiety long after the initial trauma has passed.
• Survivor's guilt and imposter syndrome are common, especially for parents whose children have more mild outcomes. The initial trauma is what unites this community, not the outcome. The shape of difficulty may be different for each family; the weight of it is not.
• As children grow, new challenges arise—school transitions, new diagnoses, shifting therapies—that can bring emotional weight all over again.
• Kori shared an important tip to prevent burnout: "Give yourself permission to do one thing less than you think you have to." You don't have to do everything at full capacity, you are already doing enough.

There is no finish line for parental mental health. The goal isn't to be done processing. It's to keep going, with support, community, and a little more grace for yourself.

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You Deserve Support

The HIE journey can feel isolating. The complexity, the uncertainty, the grief. None of it is easy to explain to people who haven't lived it.

There are parents at every stage of this journey who understand without needing a preamble. Seeking help is not a sign of weakness. What happened was real. Your feelings are real. And you deserve support, whatever shape that takes.

Hope for HIE has resources available to support you on this journey. Families can connect in at HIE.Support to match with a Peer Support Mentor or check out monthly support groups available on the events page of the website.

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Thank you to Kat K., Ravi S., and Kori M. for so generously sharing your personal experiences and insights in this Peer Perspective panel. Your voices bring connection, understanding, and real hope to families navigating HIE and parental mental health together.

To watch the full Peer Perspective Panel or to read our key takeaways at a glance, click the buttons below!