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Communicating Uncertainty in HIE — A Primer for Clinicians

June 25th, 2026  | Care  | News

 

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What families with HIE need from you when the honest answer is "wait and see"

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The uncertainty is real, and it isn't going away

It helps to be honest with yourself first: HIE outcomes sit on a wide bell curve, and our prognostic tools, even the good ones, can only narrow it so far. And, it's not a personal or professional failure to accept this uncertainty.

Let's just say it, HIE is complex. It always has been, and it likely always will be.

No two injury patterns produce the same outcome. Causation is heterogeneous — sentinel events, in-utero factors, sudden unexpected postnatal collapse — and genetic overlap is small. Even advanced prognostic tools leave meaningful room for variation.

A recent analysis of automated EEG background and two-year outcomes (Cornet, Glass, et al., JAMA Network Open, 2025) put it plainly: because neurodevelopmental outcomes are shaped by the home environment, every prognostic tool will stay imperfect — which, the authors note, leaves "room for hope" for infants with HIE and their families.

That's the reframe worth carrying into the room. Uncertainty isn't a failure of your prognostication. It's an honest feature of the condition. And it can be the gateway to anchor families in realistic hope rather than false reassurance or premature despair.

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Anchor what you know. Be honest about what you don't.

Families don't need you to predict the future. They need you to hold the uncertainty with them and give them something solid to stand on.

And there are tools that can help! We're outlining one, but there are several found in the resources and citations at the bottom of this post.

The ALIGN Framework — a parent-informed approach to prognostic communication for infants with neurologic conditions (Lemmon et al., Neurology, 2023) — is built around exactly this. It offers concrete language for naming what is reasonably certain while being transparent about what remains unknown. In practice, that means setting an anchor across the domains families will actually live with: motor, cognition, seizures, and vision and hearing. You can be honest that you don't know the magnitude of impact in each, while still being concrete about the range of what that domain can look like.

A few things that make this land:

Name the diagnosis out loud. Say HIE. Say the words families will be Googling at 2 a.m. anyway — cerebral palsy, epilepsy, CVI. A clear term they can carry is more humane than a vague "we're watching some things." Ambiguity doesn't protect families; it isolates them.

Be concrete about what outcomes can look like. Ask yourself what mental image a parent forms when they hear "cerebral palsy" to people who likely have not had much interaction with the disability community. For many, it's usually the most severe outcome picture that comes to mind. Fill in the real range — include how some kids may need assistance walking and that could look like orthotics, a walker, or a wheelchair, some may have just one arm impacted, some may have speech impacted and need speech therapy or use a device to communicate — so the term informs rather than terrifies.

Don't predict the whole life from the NICU. Most clinical trials and follow-up end at two or three years, where the outcome data (and the funding) usually stop. Families keep going for decades. Vision concerns at three months, a CP diagnosis at nine months, epilepsy onset at eight years, anxiety at ten — the journey unfolds long after your last visit, and later outcomes are very difficult to predict.

Know who you're talking to

Families don't cope in one way, and the parent in front of you is coping in a style shaped by their history, culture, and the resources they had in the moment.

Work mapping the HIE caregiver journey (Converse, Pilon, et al., presented at the International Newborn Brain Conference, 2023) and the clinical experience of our own social work team point to recognizable patterns.

High-Res Poster PDF

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THE PHENOTYPES OF COPING WITH HIE

Some parents are information seekers, trying to regain control through data. Some are optimistic minimizers, surviving emotionally by staying forward-focused. Some are vigilant watchers, determined never to miss something critical again. Others are meaning makers, comparison seekers, present-focused survivors, or grief-dominant — each with a different underlying need.

Jennifer Schaefer, CAPSW, Hope for HIE social worker, developed this phenotype concept.

There is no right or wrong way to cope. But the way you deliver information should flex to meet it. The data-hungry parent needs sources and specifics. The grieving parent needs you to slow down and acknowledge loss before you offer a single statistic.

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What families need to hear from you

Some things are true for nearly every family, and saying them out loud matters:

• Guilt and shame are normal — no matter what brought them to the NICU. Naming that early gives parents permission to stop blaming themselves.
• Two parents often cope in different styles and on different timelines, and they're usually unaware that this is common between them. A sentence acknowledging it can prevent months of partners feeling out of sync or alone.
• Watch for bias of marginalized populations: Historically marginalized families, single parents and young parents frequently don't feel taken seriously. Watch for it, and correct for it.

And here's a reassurance worth offering explicitly, especially to families years down the road:

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Don't let them leave alone

The single most concrete thing you can do at the end of a hard conversation is make sure the family doesn't walk out the way they came in.

Hand them a connection. Trauma-informed care includes "choice and voice" as well as "connection to peer support". Some families will opt into support right away, some later, and some may not. Connection to support gives families the empowerment in their journey of when and how they have support, but they need to know it exists first.

Hope for HIE offers support across every outcome, age, and impact: a credentialed social worker who can connect families to counseling and local resources, a certified child life specialist, weekly video support groups for newly diagnosed and loss families, trained 1:1 and on-call peer mentors, and a peer network of 100+ groups built since 2010. Families can start with a single intake form at HIE.support, and you can request support packages and printable materials for your NICU, PICU, or clinic below.

Request Materials

You will not always have answers. You will sometimes have to say "wait and see." But you can always say it in a way that names the diagnosis clearly, anchors what's known, honors how this particular family copes, and points them toward people who have been there.

Uncertainty is uncomfortable. How you communicate will be one of the most lasting things you'll give a family — long after they've left your unit.

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The Journey Ahead

Many clinicians may only see and communicate with families facing HIE in the NICU or acute care setting. But, the acute care setting is the beginning of a lifetime journey with HIE, regardless of how HIE impacts the baby or child. This is why transparent, accurate and tailored communication is essential.

Jennifer Schaefer, CAPSW, Hope for HIE social worker, developed this post-acute coping journey concept.

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Resources & Citations:

Source: PubMed. Citation years reflect the journal volume/issue of record; for articles published online ahead of print, the DOI link resolves to the definitive version. This is a starting reference set, not an exhaustive systematic search.

Printable Resource List