When your baby is diagnosed with HIE, it can feel like you’ve suddenly been dropped into a world where everything is unfamiliar — a whirlwind of medical terms, acronyms, and test results you’re expected to understand on the fly. It’s like learning a completely new language overnight, all while navigating the emotional weight of the NICU. From lab values and brain scans to monitoring markers and discharge plans, it’s not just about keeping up — it’s about trying to make sense of what it all means for your baby’s future.
To help decode that complexity and take some of the mystery out of it, we sat down with Dr. Elizabeth Sewell, neonatologist at Emory in Atlanta, who walked us through everything from Sarnat scores to Apgars, blood gases, and what to expect as you move toward discharge — all with the goal of helping families feel more confident, informed, and empowered along the way.
Missed the live Q&A? No worries. Like any good partner, we took notes and are willing to share!
For many families, the journey toward understanding begins right at delivery. HIE most often affects full-term or near-term babies, and diagnosis starts with what happens in those first critical hours. A neonatologist typically attends any high-risk birth, and certain red flags raise concern for HIE: an abnormal heart rate during labor, significant complications like blood loss or umbilical cord issues, low pH or signs of acidosis in bloodwork, the need for resuscitation, or a baby who doesn’t look or act like other newborns.
As we’ve heard before from both Dr. Mark Scher and Dr. Monica Arroyo, it is not just one thing that leads to an HIE diagnosis—it’s a combination of signs, observations, and clinical findings. Examining a newborn’s neurological function takes careful attention to detail, especially since they can’t tell us how they feel. Providers assess how the baby moves, responds, and behaves compared to typical newborn patterns. Is the baby alert? Responsive? Active? These early clues help build the clinical picture.
But even with these assessments, getting to a clear diagnosis isn’t always straightforward. The language around HIE can be confusing. Some providers use “neonatal encephalopathy” (NE), others use “HIE,” and some may not use either term clearly—leaving families to discover the diagnosis later on in a discharge summary. That’s why our team at Hope for HIE is working hard to build a framework to help families understand the diagnostic process and gain clarity, even when things feel uncertain.
Depending on how and where the baby was born, there’s also a big difference in what providers can know and discover; for instance, if a baby is transferred to a higher-level NICU after birth, teams often work backward through records to piece together what happened. In contrast, if a provider is present at a high-risk delivery—like an emergency C-section—they may already have a clearer picture based on what they observed.
What’s most important is open, compassionate communication. Families deserve to be kept informed of the first signs of concern—like a stressful delivery or an abnormal exam. The initial conversation may be: “Something during delivery made us concerned your baby may have been stressed. We’re going to monitor closely.” If the baby’s exam continues to be abnormal, that calls for a second conversation: “Your baby isn’t acting like we’d expect a newborn to act. This could indicate a lack of oxygen or blood flow to the brain, which we call HIE.”
Naming the diagnosis is important. Avoiding it doesn’t serve families in the long run. If providers aren’t sure, that’s okay too—they can say: “We’re still gathering information. There are several possible causes, and we’ll work together to figure it out.”
At its core, this process is about recognizing concerns early, clearly communicating them to families, and ensuring they feel supported, seen, and informed through every step.
When a baby experiences a possible brain injury at birth, time matters—and so does having the right information. In those critical first hours and days, medical teams use a combination of tools to assess what’s happening and guide the best course of care.
The Sarnat scale was originally developed in the 1970s to describe the stages of brain dysfunction (or encephalopathy) in newborns over time. It looked at 14 different features—including EEG—and helped doctors understand how a baby’s condition changed over the first few days or even weeks of life. While it was a valuable tool, it was detailed and time-consuming — not ideal when quick decisions are needed.
When research showed that therapeutic hypothermia (cooling) might help protect the brain from further injury, doctors needed a faster way to identify which babies might benefit. That’s where the Modified Sarnat exam comes in.
The Modified Sarnat Scale was adapted to be used in the first hours of life, not days later. It doesn’t require an EEG and focuses on six key areas:
Using this streamlined exam, clinicians can quickly classify the baby’s condition as no encephalopathy, mild, moderate, or severe. The higher the classification, the more severe the symptoms, which helps determine if cooling therapy should be started.
This modified tool has since been studied and standardized across many hospitals and providers, helping ensure babies are assessed consistently and reliably during a critical window of time.
It’s important to remember that the Modified Sarnat Scale offers a helpful snapshot—but it’s not the whole story.
While the Modified Sarnat Scale is a valuable tool, it’s important to understand what it does—and doesn’t—tell us.
The Sarnat exam is not meant to predict long-term outcomes. Instead, it offers a snapshot in time—an assessment of how sick a baby appears neurologically at that moment. It’s used to help guide immediate treatment decisions, like whether a baby may benefit from therapeutic hypothermia (cooling).
But encephalopathy isn’t static—it changes over time. And that trajectory matters. A baby might show signs of severe encephalopathy at the start, but that can improve—especially with interventions like cooling. In fact, one of the goals of cooling is to modify that trajectory. So, while an early Sarnat exam might show significant symptoms, those signs can lessen or even normalize before a baby goes home.
Also, it’s worth remembering that the Sarnat scale reflects what we can observe externally—it doesn’t tell us everything about what’s happening inside the brain. That’s why other tools like MRI and EEG are so important (and necessary!) They give a fuller picture of the brain’s structure and function beyond what we can see in a physical exam.
APGAR scores are a quick, standardized way to check how a baby is doing right after birth. They look at five things: heart rate, breathing, color, reflexes (grimace), and muscle tone, each scored from 0 to 2. The total score ranges from 0 to 10, with higher numbers meaning better physical condition—though it’s rare for any baby to get a perfect 10.
APGARs are given at 1 and 5 minutes after birth, and then again if needed—especially if the baby requires resuscitation. These scores can help guide immediate care, but they’re not meant to diagnose HIE or predict long-term outcomes on their own. They’re just one part of the bigger picture.
Blood gases are a common test used in babies and adults to understand how well the body uses oxygen and gets rid of carbon dioxide. In newborns, especially when there’s concern for HIE, doctors often look at the umbilical cord blood gas—a sample taken right after birth from the baby’s life source.
Two key parts of this test are the pH and base deficit, which tell us if there’s a buildup of acid in the body. When a baby hasn’t gotten enough oxygen or blood flow, acid can build up—this is called acidosis. If we see acidosis in the cord blood, it may mean that the problem happened close to the time of delivery, and that’s important because treatments like cooling are most effective when started soon after the injury.
Sometimes, if a cord sample isn’t available, doctors may use a blood gas taken directly from the baby soon after birth instead. Either way, this test helps give an early clue about what the baby experienced around delivery.
When there’s concern for HIE, medical teams look at several key factors right after birth to help determine whether a diagnosis is likely — or if it can be ruled out. This process starts in the delivery room.
Not every baby who experiences a complication or has abnormal blood work will develop HIE. However, every baby with potential risk factors must be closely evaluated to make sure nothing is missed.
Even babies who show only mild concerns at first may still be at risk for delays later in life. That’s why many medical centers now perform serial exams — repeated checks over time — to watch how a baby’s neurological status evolves. Most babies improve, but a small percentage may develop more noticeable symptoms, and early detection can change the course of care.
While seizures are often imagined as dramatic, jerking movements, that’s actually quite rare in newborns. Many neonatal seizures (which are most commonly caused by HIE) are subtle or even completely invisible to the eye, which makes diagnosis complicated.
Specialized tools need to be used in order to “catch” a seizure, and the gold standard for this is a continuous EEG, which looks at the brain’s electrical activity in real time. Another tool called amplitude-integrated EEG (aEEG) is often used as well, offering a more streamlined version with fewer electrodes. Current guidelines recommend monitoring all babies with HIE using one of these technologies.
At many centers, babies who qualify for therapeutic hypothermia (cooling) are placed on EEG monitoring as early as possible — and kept on it at least until they’ve completed rewarming or until any seizures are fully resolved.
Why does this matter? Because:
The goal is to treat seizures early and stop treatment as soon as it’s safe. Most seizures related to HIE are short-lived and caused by the initial injury. Most babies with HIE will not go on to develop epilepsy, and many can safely stop seizure medications before leaving the NICU or shortly after.
This approach has shifted dramatically in recent years. At some centers, nearly all babies used to be discharged home on anti-seizure medication. Now, thanks to research and efforts to change practice, more babies are weaned off medication safely before going home — avoiding weeks or months of unnecessary treatment.
It’s also crucial that families leave the NICU feeling empowered and informed. That includes:
One of the most important questions every parent asks is: “When can my baby come home?” For any newborn — including those with HIE — three key milestones need to be met before discharge:
In most cases, babies with HIE can breathe and stay warm on their own, though some may need extra help with clearing secretions. Feeding is often the biggest hurdle — many babies need time to coordinate sucking, swallowing, and breathing. While many eventually feed by mouth, some go home with feeding tubes as part of their care plan.
In more severe cases, some babies may be discharged with additional medical equipment, like a ventilator. If that’s the case, the medical team works closely with the family to ensure a safe and well-supported discharge, which includes thorough training on how to care for their baby at home.
The transition from NICU to home can feel like falling off a cliff — especially when the hospital stay has been emotionally and physically overwhelming. That’s why ongoing conversations throughout the baby’s hospitalization are so meaningful (and important!) The care team gathers more information over time, which helps shape each baby’s individualized discharge plan.
Rather than giving families a diagnosis and sending them off, clinicians need to help prepare parents for what’s ahead. The goal is to have them leave the hospital feeling as empowered, informed, and supported as they can — not just for the first few days at home, but for the long road of healing and development to come. That includes:
Neonatal follow-up care for babies with HIE varies by state and available resources. In Georgia, where Dr. Sewell works, care is organized across six perinatal regions, with Atlanta serving as the largest region. Each region has its own follow-up center dedicated to supporting children after their NICU stay. These centers typically follow children up to age five, ensuring early and ongoing developmental assessments and interventions are available.
Any baby diagnosed with encephalopathy or HIE—whether or not they received therapeutic hypothermia (cooling)—is referred to a follow-up clinic. These clinics are multidisciplinary, providing families access to specialists in physical therapy, speech and language, developmental pediatrics, and more. The goal is to identify developmental needs early and provide timely interventions, which can make a significant difference in long-term outcomes.
From a neonatologist’s perspective, one of the most important things to emphasize is that follow-up care matters, even if the child seems to be developing without visible concerns. Regular follow-up visits act as a safety net, helping catch subtle delays and connecting families with the appropriate therapies and resources to improve the child’s developmental trajectory.
Dr. Sewell emphasizes that one of the most important things to convey to families, particularly mothers, is that this is not your fault. As parents, many carry the weight of guilt and wonder if there’s something they could have done differently. Dr. Sewell often hears mothers ask, “What if I had done this or that?” It’s essential to understand that HIE is an unfortunate complication that can occur during birth, and it’s not because of anything parents did or didn’t do.
Dr. Sewell also stresses that families are not and should not feel alone. The clinical team is there to support them throughout the journey, answer questions, and guide parents. And while she notes that she can’t truly understand what it’s like to be a parent in this situation, she knows that peer support is invaluable. Connecting with other families with shared or similar experiences can offer comfort and strength.
Dr. Sewell has a clear hope for the future: a world without HIE. While that’s the ultimate goal, she emphasizes that getting there starts with improving healthcare for pregnant women. Better care for expectant mothers could significantly lower the risk of HIE, though she acknowledges it may never be entirely eradicated.
That’s why continued research into new therapies is so important. Although treatments like EPO didn’t work out as hoped, promising therapies are still in the works, and Dr. Sewell remains optimistic about future breakthroughs.
She also points out that many babies today don’t meet the criteria for cooling, highlighting the need for new treatments for those who don’t qualify.
On top of that, Dr. Sewell highlights the ongoing issue of healthcare disparities in the U.S., particularly in rural areas. Many regions face what she calls “maternal and childcare deserts,” where access to vital services like cooling and follow-up care is limited. In Georgia, however, the perinatal regions are working to address these gaps by ensuring every area has facilities equipped for cooling. Dr. Sewell is hopeful that continued efforts to improve early interventions and expand access to care, especially in rural communities, will help ensure every family has access to the best possible care.
To watch the full Q&A, visit our 2025 Awareness Month Playlist on YouTube, and click the button below for our key takeaways at a glance!
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