One of the hardest parts of HIE is the waiting.
Families often leave the NICU or PICU with test results, medical language, follow-up appointments, and a phrase they may hear over and over:
We will have to wait and see.
Wait and see how your baby develops.
Wait and see whether new challenges appear.
Wait and see what the MRI means in real life.
Wait and see what the future looks like.
That may be medically honest, but it can be incredibly hard for families to live inside.
The “wait and see” of HIE can last for months or years. Even the best tests and most experienced clinicians cannot predict every child’s future with complete certainty.
But it is also important to understand what “wait and see” does — and does not — mean.
In HIE, “wait and see” usually means that some developmental, neurological, learning, behavioral, vision, hearing, or seizure-related differences may not be obvious right away.
A newborn MRI, neurological examination, EEG, and early developmental assessments can provide valuable information. They help clinicians identify risk, guide follow-up, and make treatment decisions.
But they cannot tell a family exactly who their child will become.
Research shows that early EEG and MRI findings can help estimate the likelihood of later developmental disability, but their predictive accuracy is not perfect. They are tools for understanding risk—not crystal balls for an individual child’s future.
Some differences only become noticeable when a child reaches the age when a particular skill is expected.
Long-term research has found that children who do not develop cerebral palsy can still experience later epilepsy, cognitive, memory, attention, language, behavioral, or executive-function difficulties. That is one reason follow-up should extend beyond the toddler years and beyond motor development alone.
In these situations, clinicians may genuinely not know yet.
That does not automatically mean they are dismissive, unskilled, or hiding information. It may simply mean a child has not yet reached the stage when a particular strength or challenge can be clearly measured. The good news is more research is happening to try and identify markers for development to give more accurate predictions, and to develop effective interventions to improve outcomes.
That is the honest part of “wait and see.”
“Wait and see” should not mean doing nothing.
It should not mean delaying appropriate referrals, ignoring parent concerns, skipping developmental follow-up, or withholding support until a child has fallen significantly behind.
Published HIE follow-up recommendations support enrolling infants in multidisciplinary follow-up programs so developmental differences can be identified, intervention can begin when needed, and families can receive counseling and support.
This is important across the spectrum of HIE.
Even infants initially described as having mild HIE are not universally free from later developmental concerns. A systematic review found an abnormal outcome in approximately one-quarter of the infants with mild HIE included in the analyzed studies, reinforcing the need for thoughtful follow-up rather than assuming that “mild” means unaffected.
Families should not have to wait for every future question to be answered before receiving help for a need that exists today.
Depending on the child, support may include:
Early intervention does not require anyone to predict a child’s final outcome.
It responds to the child who is in front of us now.
Not necessarily.
The research does not show that every infant with HIE should automatically receive every type of therapy, regardless of development or current need.
For one child, an abnormal neurological examination, feeding difficulty, movement asymmetry, unusual muscle tone, vision concern, or delayed skill may support beginning therapy right away.
For another child who is developing as expected, the most appropriate plan may be scheduled developmental assessments, family education, and close monitoring with a clear pathway to services if a concern emerges.
Monitoring should still be active and structured.
It should include specific follow-up appointments, attention to the full range of possible HIE impacts, and a plan for acting when a new concern appears.
For infants who have cerebral palsy or are considered at high risk for it, international clinical guidance recommends beginning early, active, goal-directed and family-centered intervention rather than waiting for the diagnosis or disability to become more obvious.
That evidence is highly relevant to some children with HIE, but it should not be stretched to mean that every child with HIE requires the same treatment plan.
The goal is individualized support—not therapy simply for therapy’s sake.
“Wait and see” should never be the entire plan.
Families deserve to know (and you can reframe as questions and ask these of your team!):
A good plan will likely change as a child grows.
A child may be discharged from therapy after meeting current goals and return later when a new challenge emerges. A child who appeared to be developing typically as a toddler may need support when language, attention, behavior, coordination, or school demands become more complex.
That does not necessarily mean something was missed or that earlier care failed.
It may mean the child has reached a new developmental stage where a difference can finally be seen and understood.
No amount of testing can remove every unknown after HIE.
Early intervention also cannot guarantee a particular outcome or prevent every later challenge.
Its purpose is to respond to current needs, support emerging skills, equip families, and avoid unnecessary delays once a concern becomes clear.
The most appropriate approach is neither predicting problems that may never occur nor ignoring risk until a child is significantly behind.
It is active surveillance, timely support, and an evolving plan centered on the child in front of us.
The future may not be fully predictable.
But families should never be left alone inside the waiting.
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