Imagine going to the hospital after nine months of pregnancy expecting to have a perfect birth and baby only to suffer from a tragic birth complication. Your doctor shares that your baby has a brain injury and must be transferred to the neonatal intensive care unit (NICU) for cooling treatment. You meet your baby surrounded by machines and loud monitors. For three long days during this cooling treatment, you are not allowed to perform simple acts of parenthood, you cannot feed your baby, wash your baby, or even hold your baby. This is what thousands of parents face each year when their babies are diagnosed with hypoxic-ischemic encephalopathy (HIE), despite a lack of evidence that holding during cooling leads to harm.
Perinatal HIE is a type of brain injury that results from the lack of oxygen or blood flow to the developing brain. The standard treatment for HIE is cooling, aka “therapeutic hypothermia,” where the infant is placed on a blanket to lower their body temperature for 72 hours then slowly rewarmed. Historically, families have not been able to hold their infants during the cooling process due to concerns about equipment and wires, temperature regulation, and seizures. This separation of parent and child delays bonding and attachment and adds further unnecessary trauma to the parents. One mother shares: “Not holding my son was one of the hardest things. He wanted it so much. He would cry when he would hear my voice, try to pick his head up to find me. When I could finally hold him, it felt like all his stress melted away and he finally felt comforted after that long first week.”
The historical standard of not allowing parent holding of infants with HIE is not due to evidence of harm. In fact, recent research points to the fact that holding during cooling is feasible and safe. Albeit with modest sample sizes and observational design, these studies have demonstrated that holding during cooling can be done without clinically significant temperature instability, vital sign changes, or adverse events. Despite this, many centers across the world still do not allow families to hold their infants during cooling. A recent international survey found that only 38 percent of NICUs offered holding during cooling. This gap between evidence and practice highlights the need for a coordinated effort to change practice. The barriers are not safety and science; they are structural and cultural. It is a worry about risk, about logistics, about change. These concerns can be solved with implementation support. And this is where the HIE hold-a-thon comes in.
In honor of HIE Awareness Month in April, the Newborn Brain Society and Hope for HIE are partnering to sponsor the inaugural HIE hold-a-thon. The goal of the HIE hold-a-thon is to raise HIE awareness, demonstrate that safe holding is achievable, and to support families during this time of trauma. It is unique in that it is not prescriptive with a one-size-fits-all approach and is customizable. Importantly, the hold-a-thon urges “polar bear care,” a framework that incorporates six principles of trauma-informed care into parent holding and highlights the unique population of babies receiving therapeutic hypothermia for HIE. Starting April 1, over 40 NICUs across multiple countries will implement new or revised holding protocols simultaneously. What makes this initiative so powerful is not just the number of sites, it is the timing. It is the act of multiple hospitals coordinating change together for a single purpose, creating momentum that individual institutions may struggle to achieve alone. Clinicians benefit from knowing they are not changing in isolation. Families benefit from the shared acknowledgement that this is important, it matters, and it is time to change.
Evidence alone does not change practice. The hold-a-thon is an opportunity for a medical society and advocacy organization to bring together the clinical expertise and research credibility with the lived experience and an understanding of what matters to families in crisis. Hope for HIE has prioritized this initiative after years of hearing directly from HIE families about how this intimate connection after birth has lifelong impacts to both parent and child. Gabriel Variane, president of the Newborn Brain Society, said: “The hold-a-thon is not only about enabling parents to hold their babies, but also about redefining partnership in neonatal care. For families, holding their baby marks the beginning of connection, healing, and hope. When families and clinicians move forward together, change happens faster, care becomes more human, and outcomes improve in ways that matter most.” This partnership is more effective than either organization alone, translating existing evidence into real-world practice changes. This is about more than HIE. The evidence-to-implementation gap exists throughout medicine. There are times when implementation, not evidence, is the bottleneck. Consider what gaps exist between evidence and practice in your work, and consider how partnerships can more effectively move your practice from research to implementation.
Elizabeth Sewell, MD, MPH, a neonatologist, Alexa Craig, MD, a pediatrician, and Betsy Pilon, a health care executive, write on behalf of the Newborn Brain Society and Hope for HIE.
