A new call to action in Pediatric Research is urging neonatal care teams to place families at the center of treatment and research involving hypoxic-ischemic encephalopathy, a devastating form of brain injury that can occur when a newborn’s brain is deprived of oxygen and blood flow. The article, led by Beatrice Pilon, Mariona Cavaller-Bellaubi and Mary Daly, argues that parents and caregivers should not be treated merely as recipients of information. Instead, their lived experience should actively shape clinical practice, research priorities and the long-term support offered to children affected by the condition.
Neonatal hypoxic-ischemic encephalopathy, commonly known as HIE, can develop before, during or shortly after birth. Reduced oxygen delivery disrupts the brain’s energy supply, impairing the production of adenosine triphosphate, the molecule cells use to power essential functions. When energy reserves collapse, neurons lose the ability to maintain their electrical gradients, cellular membranes become unstable and a cascade of biochemical events can trigger inflammation, oxidative stress and cell death. The initial injury may be followed hours later by a secondary phase of damage, making rapid diagnosis and intervention critical.
For eligible infants with moderate to severe HIE, therapeutic hypothermia is currently a principal treatment. The newborn’s body temperature is carefully lowered, typically for 72 hours, before being gradually rewarmed. Cooling slows metabolism and may limit the secondary injury cascade, improving the chances of survival without severe disability. Yet even with advances in neonatal intensive care, the outcomes remain highly variable. Some children develop cerebral palsy, epilepsy, learning difficulties, visual or hearing problems, behavioral differences or cognitive impairments, while others show relatively few long-term effects. Families are often left navigating this uncertainty from the first hours of their child’s life.
The article emphasizes that the medical emergency does not end when the infant leaves the neonatal intensive care unit. HIE can influence development over many years, and the challenges may change as a child grows. Early motor problems can later be accompanied by difficulties with language, memory, attention, executive function or social interaction. Standard neurological examinations and developmental assessments may not capture the full impact on daily life. Parents frequently become the first to notice subtle changes, identify barriers to care and coordinate appointments across multiple specialties, giving them a unique perspective that can strengthen both diagnosis and follow-up.
According to the authors, meaningful family engagement requires more than asking parents to sign consent forms or complete questionnaires. Families should be involved in deciding which research questions matter most, designing studies, interpreting findings and determining how results are communicated. Their experiences can reveal outcomes that researchers might otherwise overlook, including sleep disruption, transportation difficulties, financial stress, limited access to rehabilitation and the emotional consequences of living with an uncertain prognosis. These details are not peripheral to clinical science; they help define whether a treatment or care pathway genuinely improves a child’s life.
The call also highlights the importance of communication during the first days after birth. Parents of infants with HIE may be confronted with complex explanations about brain imaging, seizures, cooling protocols and possible outcomes while coping with fear, exhaustion and shock. Technical accuracy must be matched with clarity and compassion. Clinicians may need to explain that magnetic resonance imaging can show patterns of injury but cannot always predict an individual child’s future with certainty. Similarly, the absence of obvious early symptoms does not guarantee that later developmental concerns will never emerge. Families need information that is honest, understandable and revisited over time.
Seizures are a particular concern in HIE because abnormal electrical activity can further stress an already injured brain. Many seizures in newborns are clinically silent, meaning they can be detected only through electroencephalography, or EEG. This makes continuous brain monitoring an important part of care in many intensive care settings. However, the article’s family-centered approach underscores that clinical decisions should also consider the experiences and priorities of caregivers. Parents may need help understanding why monitoring is necessary, what treatments can and cannot achieve, and how short-term interventions relate to longer-term neurological development.
The authors further call for research systems that include families who are often underrepresented. Language barriers, cultural differences, disability, poverty, geographic isolation and unequal access to specialized hospitals can all affect whether families participate in studies or receive consistent follow-up. If research includes only those with the time, resources and confidence to engage with academic institutions, its conclusions may not reflect the wider population of children with HIE. More inclusive approaches could involve flexible appointments, remote participation, translated materials, compensation for time and travel, and partnerships with parent-led organizations.
This shift could also accelerate the development of better outcome measures. Traditional studies often focus on survival, major disability or standardized developmental scores. Families may define success more broadly: the ability to communicate, attend school, form relationships, sleep independently, participate in play or manage everyday activities with appropriate support. Bringing these priorities into clinical trials could produce a more complete picture of whether an intervention works. It may also encourage researchers to study quality of life, caregiver well-being and the effectiveness of long-term rehabilitation alongside brain imaging and neurological examinations.
The message from Pilon, Cavaller-Bellaubi, Daly and their colleagues is ultimately both scientific and societal: families possess essential knowledge about HIE, and neonatal medicine cannot reach its full potential without it. By treating parents as partners rather than observers, healthcare professionals and researchers can improve communication, identify overlooked needs and design services that follow children beyond the intensive care unit. For families confronting one of the most frightening emergencies in newborn medicine, participation is not simply an invitation to be heard. It is a route toward care that is more accurate, more humane and better aligned with the realities of life after neonatal brain injury.
Subject of Research: Family engagement in neonatal hypoxic-ischemic encephalopathy care and research
Article Title: Engaging families with experience of neonatal hypoxic ischemic encephalopathy: a call to action
Article References: Pilon, B., Cavaller-Bellaubi, M., Daly, M. et al. “Engaging families with experience of neonatal hypoxic ischemic encephalopathy: a call to action.” Pediatric Research (2026). https://doi.org/10.1038/s41390-026-05329-1
Image Credits: AI Generated
DOI: 10.1038/s41390-026-05329-1
Keywords: neonatal hypoxic-ischemic encephalopathy, HIE, neonatal brain injury, therapeutic hypothermia, family engagement, neonatal intensive care, neurodevelopment, pediatric research, brain injury, parent participation
