Position Statement on the 2026 AAP Clinical Report: Therapeutic Hypothermia for Neonatal Hypoxic-Ischemic Encephalopathy (HIE)
January 27th, 2026 | News
Hope for HIE welcomes the updated 2026 American Academy of Pediatrics (AAP) Committee on Fetus and Newborn Clinical Report, Therapeutic Hypothermia for Neonatal Hypoxic-Ischemic Encephalopathy. The report provides clear, evidence-based guidance on therapeutic hypothermia (TH) for infants with moderate-to-severe HIE, reinforces critical safety and implementation standards, and importantly highlights family consultation in borderline and late-presenting cases. We applaud this continued commitment to high-quality, standardized care and the recognition that parents are essential partners in decision-making.
Key Points of Agreement
- Family Consultation in Borderline and Late-Initiated Cooling
The recommendation that parental discussion and documentation accompany decisions around late initiation (6–24 hours) or borderline cases reflects a meaningful step toward shared decision-making. Hope for HIE strongly supports this inclusion, recognizing that families value transparent communication and the opportunity to participate in decisions that may affect long-term outcomes. While some concerns have been raised on putting onus on families for making this decision, it is important to emphasize the shared-decision model of decision making.
- Equity in Access to Therapeutic Hypothermia
The report underscores the need for standardized eligibility criteria, transport protocols, and regional collaboration to ensure all eligible infants have access to cooling within the six-hour window. We emphasize that this must include family communication, education and psychosocial support at every step, particularly during transport and transfers.
- Family-Centered Care is Essential and Applicable
Trauma-informed, accurate and comprehensive communication and care to involve families early in developmental care during therapeutic hypothermia is essential care for families. There are many co-produced resources for the care team to implement with communication best practices, scripting, and involvement of neonatal therapists. We are thrilled to see the inclusion of evidence that holding and/or feeding during therapeutic hypothermia is safe for many babies with HIE, and reduces parental stress, anxiety and the impacts of trauma for many families, as well as promotes bonding.
- Acknowledgment of Uncertainty for Mild HIE
The Committee’s conclusion that therapeutic hypothermia for mild HIE should not be routinely performed outside research settings reflects the current state of evidence. We agree that further data are required to determine safety, efficacy, and long-term outcomes—but this uncertainty underscores an urgent call for inclusive, well-designed studies that reflect the experiences and priorities of affected families.
- Clarification of Eligibility Beyond Sentinel Events
We support the report’s position that initiation of therapeutic hypothermia should not require confirmation of a sentinel hypoxic-ischemic event. Eligibility grounded in biochemical evidence and clinical signs of moderate-to-severe encephalopathy helps reduce delays in care and supports more equitable access to treatment. We emphasize that sentinel events should inform clinical suspicion—not function as exclusion criteria—ensuring that infants without a clearly identified acute event are not inadvertently excluded from timely evaluation and potential treatment.
Areas for Continued Progress
- Inclusion of Families in Research on Mild HIE
Despite growing awareness of long-term neurodevelopmental challenges in mild HIE, this population remains largely excluded from therapeutic trials, and standardized follow-up at key neurodevelopmental timepoints. The standard in research begins with moderate-severe HIE, but must include mild HIE moving forward.
- Inclusion of Patient-Family Input in Developing Guidelines, Clinical Reports, Published Articles
There are no listed patient-family participants in the workgroups and author lists for this work. This is an ongoing issue where patient-family perspective is not included in important workgroups that discuss what is "best" for families of babies facing neonatal encephalopathy and hypoxic ischemic encephalopathy. This will continue to perpetuate barriers until a more meaningful co-production becomes standard throughout AAP and other entitites.
- Improving Communication and Diagnostic Clarity
Many families still report delayed or unclear communication about the HIE diagnosis, often learning the term “HIE” from discharge paperwork rather than their clinical teams. Diagnostic clarity is a matter of ethics and trust. Families deserve honest, compassionate communication—even amid uncertainty—to foster understanding, health literacy, and informed participation in care and research. Medicolegal considerations are no reason to withhold a suspected, probable, or confirmed HIE diagnosis, or conflating Neonatal Encephalopathy with HIE, using the terms interchangeably.
- Multidisciplanary Teamwork with Child Neurology is Essential
Pediatric neurology consultation and involvement is critical and essential for families facing HIE. While neonatologists may serve as the lead clinician in most neonatal ICUs, pediatric neurologists partner and will be a part of the longitudinal care team. Therefore, their involvement in team communication with families, and continuity of care from acute care to outpatient care, education regarding seizure risk and neurological outcomes is critically important, not just something that "can be valuable". It is essential.
- Long-Term Follow-Up and Support
While the AAP emphasizes early developmental monitoring, follow-up rarely extends to the school years, when cognitive, behavioral, and emotional challenges often emerge, and mild HIE babies are too often discharged from follow-up as early as six months of age. We urge the development of standardized long-term follow-up guidelines across all severities of HIE, including seamless transition into educational and community support systems.
Looking Ahead
Therapeutic hypothermia represents one of neonatology’s greatest advances. Yet, survival alone cannot be the ceiling—it must be the foundation for lifelong outcomes and family wellbeing. As we look toward future innovations, including biomarker-guided interventions and precision therapies, Hope for HIE urges:
- Inclusion of mild HIE in clinical research,
- Systematic investment and integration of family-reported outcomes,
- Transparent communication of diagnoses and risks, and
- Investment in long-term, family-centered support.
We remain committed to partnering with clinical, research, and policy stakeholders to ensure that every family facing HIE—mild, moderate, or severe—is informed, supported, and never left behind in the pursuit of progress.
