I was struck this morning by a new article in Pediatric Research a “Family Perspectives” written by the founder of the organisation that has the same name as the title of this post, “Hope for HIE“, Betsy Pilon (Pilon B. Family reflections: what’s next for hypoxic-ischemic encephalopathy (HIE)—a patient advocacy perspective. Pediatr Res. 2025). It is an eloquent cri-de-coeur, demanding a greater voice for parents of infants with HIE:

“families affected by HIE remain sidelined in advocacy and institutional representation. We are routinely excluded in neonatology priority setting, where patient stakeholders may be represented, but HIE voices are not. The exclusion of HIE families leads to research agendas that don’t reflect our questions, timelines that don’t reflect our realities, and policies that fall short of what our children and families need.”

I think she has a point, many of our current parent partners are families of preterm infants, understandably, as they often spend weeks or months with us. HIE babies usually have shorter stays in the NICU, but the impacts on the families are just as great, and the long term impacts are sometimes greater. We should make extra efforts to ensure their voices are heard. She also points out some of the deficiencies of the longer term follow up of these children

“some families access follow-up to age two or three, very few have support as their children enter school, face academic challenges, or develop seizures, behavioral challenges, anxiety, or sensory processing issues. Research continues to overemphasize early developmental scores through assessments that are showing to not be predictive of neurocognitive development later in childhood when administered at age 2 or 3, and underemphasize the very issues that families identify as most critical in daily life”.

Any regular reader of this blog will know how much I agree with the limitations of early behavioural screening tests. Longer follow up of these infants is essential to both get a better picture of the impacts of HIE, but also to help the families to find the resources they need.

She ends with the following :

Max is now thirteen. He’s full of curiosity, humor, and resilience. He plays basketball, loves sushi, and is fiercely proud of how far he’s come. But he’s still living with the effects of HIE.
We all are.
Our journey didn’t end at discharge. It’s ongoing—and so is the work.
Let’s keep going, together.