At Hope for HIE, one of the questions we hear most often from families is: What will my child's life look like when they grow up? It's one of the hardest questions to answer — and until recently, one of the least studied. A new paper published in the journal Neuropediatrics takes a meaningful step toward filling that gap, not with test scores or clinical checklists, but with something far more powerful: the voices of four adults who were born neonatal HIE and are now telling their own stories.
This paper is deeply relevant to our community — not just because of what it found, but because of how it found it. It centers lived experience, and it validates something many of our families have felt for years: that standard outcome measures don't capture the full picture of what it means to live with HIE.
Title: Adult Perspectives on the Long-term Impact of Neonatal Encephalopathy Due to Hypoxia-Ischemia
Published in: Neuropediatrics (2026) — DOI: 10.1055/a-2817-3431
Authors: Parmentier et al., Wilhelmina Children's Hospital / Leiden University Medical Center, the Netherlands
What they wanted to know: Most research on HIE focuses on outcomes measured in early childhood or school age. This study asked: what is life actually like for adults who experienced HIE as newborns — and what can their lived experiences teach us about care, follow-up, and research priorities?
How they did it: Four adults (ages 22–32) with a history of neonatal HIE were invited to share their stories. They represented a wide spectrum of outcomes, from largely typical development to cerebral palsy. Using open-ended questions, each person described their birth and NICU experience, their developmental journey, their life today, and their hopes for the future. Clinical context and brain MRI data were provided alongside each narrative — but importantly, the researchers were careful not to shape or influence the participants' own words.
Githa, Age 32 Githa was born via emergency cesarean due to a uterine rupture. Her early MRI showed only mild abnormalities, and her development in childhood appeared largely typical — but around age 10, she began noticing memory difficulties that became more pronounced over time. Brain imaging later revealed atrophy in areas related to memory, including the mammillary bodies. Today, Githa lives independently, uses organizational strategies and alarms to manage daily life, and works with elderly individuals who have Alzheimer's disease. She credits her own memory challenges with making her especially empathetic in that work.
Robbert, Age 29 Robbert's birth resulted in cerebral palsy, and he received extensive therapy throughout childhood. He was diagnosed with epilepsy at age 10 but eventually outgrew it. Now, he lives in a supported living arrangement, works at a library five days a week, and is actively working toward greater independence. Memory and time management remain daily challenges, but he has developed strong social and computer skills. He and his brother co-created a documentary about his life that aired on national television — a source of enormous pride.
Evie, Age 22 Evie was born after emergency cesarean due to fetal bradycardia. MRI showed injury to her occipital lobes, resulting in a visual field deficit that affects her daily life — from stumbling over objects to difficulty navigating new surroundings. She attended a specialized school for children with visual impairments starting at age 6. Evie has since earned a professional degree and is preparing to begin law school. She has also written two books about her experiences, and her greatest dream is to become a professional writer.
Wouter, Age 27 Wouter was born at home following shoulder dystocia with Apgar scores of 0, 1, and 2. Despite this dramatic start, he developed typically by age 2 and was discharged from follow-up. Memory struggles persisted throughout his life but were often hidden or attributed to other causes — until this year, when he and his family finally connected those difficulties to his birth history. He is now happily married, working in project management in the energy sector, and relies on logic, structured routines, and his wife's support to navigate daily life. He describes every day as "a gift."
Despite very different outcomes and life trajectories, all four adults shared some striking commonalities.
Memory difficulties emerged as a central, often underrecognized challenge. All four described significant short-term memory problems that affected their daily lives — from forgetting whether they had eaten, to struggling with exams, to needing extensive systems to stay organized. In several cases, these difficulties were not apparent in early childhood and only became clear with time. The researchers note this aligns with an emerging concept called "growing into deficits" — the idea that some consequences of early brain injury don't fully surface until demands increase with development.
Brain imaging tells part of the story. In all four cases, follow-up MRI revealed mammillary body atrophy — injury to a small structure in the brain's limbic system that plays an important role in memory. This finding, which is easy to miss on standard imaging, may be a key marker for the memory challenges so many in our community experience.
Challenges may be invisible to clinical assessments. Standard developmental tests often fail to capture the lived experience of people with a history of NE. As Wouter's story illustrates, a person can appear neurologically "normal" on paper while quietly struggling with challenges that significantly affect their independence and well-being.
Social support is transformative. Across all four stories, family — parents, siblings, partners — emerged as a critical factor in each person's success. So did access to the right educational environments, therapies, and assistive technology. Outcomes following HIE are shaped not just by the brain injury itself, but by a complex web of medical, social, and environmental factors.
These adults are living full, meaningful lives. This may be the most important takeaway of all. Despite real and ongoing challenges, all four individuals described lives rich with relationships, purpose, and accomplishment. Their stories push back against the idea that a difficult start defines a life.
Memory problems deserve more attention — at every age. If you are living with HIE, your child (or adult child) has a history of HIE and struggles with short-term memory, this is not just "forgetfulness." It may be a real, brain-based consequence of their birth history — and it may warrant formal evaluation and accommodation. The researchers call for better memory assessment tools for children with HIE histories, and for careful evaluation of the hippocampi and mammillary bodies on MRI.
Follow-up care shouldn't stop in childhood. Several of these adults experienced challenges that were mild or invisible early on, then grew more significant over time. This study reinforces the need for long-term neurodevelopmental follow-up — not just through age 2 or school age, but into adolescence and adulthood.
Your experience as a parent or person with HIE matters to research. The authors make a strong case that research relying solely on test scores and clinical endpoints is missing crucial information. Patient-reported experiences — things like fatigue, social participation, independence, and memory — need to be part of how we measure outcomes. This is exactly the kind of work Hope for HIE advocates for.
An explanation can be healing. For Wouter, learning at age 27 that his memory challenges were connected to his birth history was profoundly clarifying — not just for him, but for the people around him. The researchers highlight that even when there is no cure to offer, an accurate explanation has real value for individuals and their families.
This paper is a meaningful reminder that the HIE journey doesn't end at discharge — or at age 2, or at school age. Life with HIE is dynamic, and the challenges and strengths of those affected continue to evolve. The four adults in this study are proof of what is possible: with the right support, accommodations, and care, people with a history of neonatal encephalopathy can and do build lives that are genuinely rich and fulfilling.
They are also showing us where the gaps are. Memory. Independence. Long-term follow-up. Research that listens, not just measures.
At Hope for HIE, we are grateful to Githa, Robbert, Evie, and Wouter for sharing their stories — and to the researchers for centering their voices. This is the kind of work that moves the field forward.
👉 Want to connect with other families navigating the long-term journey of HIE? Visit HIE.Support to reach our team, or join our community to share your story and find others who understand.
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
