An HIE diagnosis doesn't just change your child's story, it reshapes the relationships around you. In this Peer Perspective Series panel, two HIE moms, Shayna B. and Kati L., opened up about how relationships with partners, family, medical teams, and community shifted, strained, and grew across their HIE journeys.
We're sharing the key notes from the Peer Perspective Panel, along with a link to the full video on YouTube.
In the NICU or PICU, families quickly learn who they can lean on, and it doesn't always look the way they expected.
There's no universal experience of the early days. Whatever your support looked like, it doesn't reflect your worth as a parent or the strength of your child's story.
"She looks perfect." "He's going to be fine." Comments meant to comfort can instead create distance when they don't match a parent's lived reality.
If people in your life are struggling to hold space for both hope and hard truths, you're allowed to ask for what you actually need, whether that's a listening ear, practical help, or simply someone who won't argue with your gut instincts as a parent.
The parents of a child diagnosed with HIE are often navigating profound trauma together, or trying to.
Marriages and partnerships can be tested to their core. One panelist shared that she divorced during her daughter's first year of life, largely because she and her child's father weren't aligned on next steps for their daughter's care. Remarriage and blended family can become an unexpected source of healing. A supportive stepparent and in-law family can become the turning point that finally makes a parent feel less alone.
Fathers often carry a unique kind of trauma tied to powerlessness, especially when they couldn't do anything to change the outcome in the moment. That trauma can show up as overreaction, withdrawal, or difficulty engaging with therapy.
Hospitals sometimes warn families upfront that trauma like this can put significant strain on marriages. Individual therapy, even when only one partner is willing to go, can still shift the dynamic for the better.
Co-parenting and partnership after HIE isn't about getting back to who you were before. It's about finding a new foundation to stand on together, even if the path there isn't a straight line.
Protecting your energy in survival mode is not the same as giving up on a relationship. In the thick of the early days, some parents find it easier to pull inward and simply focus on their child than to keep explaining themselves to people who aren't showing up the way they need. Distancing from friends with neurotypical children of the same age can be a form of self-protection, not resentment. Watching peers hit milestones your child hasn't can be its own kind of grief.
Stepping back doesn't have to be permanent. Many parents reconnect with people, or find entirely new communities, once they're further along in processing their own trauma. Letting go of a disappointing relationship doesn't require anger or a dramatic goodbye. It's simply acknowledging where someone is capable of showing up, and adjusting your expectations accordingly.
Creating distance is a boundary, not a failure. You're allowed to protect your capacity so you can keep showing up for the person who needs you most: your child.
Both panelists agreed that finding "your people," however that looks, made all the difference.
However your community comes together, it's worth protecting and prioritizing. As one panelist put it, finding people who genuinely want to walk through life with your family is priceless.
When asked what they'd tell their earlier selves, both panelists landed on the same idea: let people help.
Relationships after an HIE diagnosis rarely look the way families expect. Some fall away, some transform, and new ones form in places you never anticipated. There are parents at every stage of this journey who understand what it means to navigate relationships in the wake of trauma. You don't have to figure it out alone.
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.
Thank you to Shayna B. and Kati L. 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!
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